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Carers Information Pack (updated 2010)

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Care for Someone with Severe Myalgic Encephalomyelitis 

We are  delighted to announce that  the paperback version of  Care for Someone with Severe ME by Greg Crowhurst is ready and available to purchase  from the Stonebird website at the following link:

http://www.stonebird.co.uk/howtosevereme.html

Greg explains further below:

It  has   also been  published in  eBook format. Also, mindful of how difficult things can be, I have made the whole  book free to read online;  I want everyone to have easy access to it.

There has never been  a more pertinent time to be raising awareness of the reality of Severe ME, witness the unfolding events in Denmark where a young woman with Severe ME  faces the threat of being forcibly removed from her home and consigned to a psychiatric ward. One thinks of the terrible experience of 25% Group members, who have also found themselves locked up in secure wards and of course Sophia Mirza.

To my great concern, here in the UK, I see middle  of the road medical  teams and researchers - who profess to be biomedical, still following a psychosocial interpretation,  still using  the same old fatigue language, still not challenging the establishment, still  compromising ME  away,  still hindering genuine knowledge, still making the person with ME  wrong,  rather than looking to their own inadequacies, their lack of knowledge and disrespect for the true nature and symptoms of ME .

There is  a shocking  willingness  in the medical and research fields to accept that psychiatry has the right to be involved with ME, a complacent willingness to call ME a fatigue condition, a willingness to  blur boundaries that should be crisp and clear and separate, a willingness to accept psychiatric interpretations, a willingness to  call illnesses that are not ME,  "ME" -  and to call ME, "CFS" .

These "compromisers", high profile in some  cases,  are just as dangerous, in my view,  as the hard line psychiatric lobby; for they are  still busy throwing  away the  truth of ME  for some other prize whether that is financial gain, funding, security, status or just ignorance.

The  word "fatigue" is not appropriate  for ME.

During the course of writing my book three young women with Severe ME, including Emily Collingridge, died. My wife, seriously ill and now greatly deteriorated, does not want to die too, just   because not enough people have the guts to challenge the psychiatric lobby, not enough  professionals have  the integrity to challenge government  policies, attitudes,  wrong health service provision and assumptions and  not enough ME  organizations are really representing people with ME.

The voice of truth is desperately needed, in these dangerous times for people with Severe ME. ME is not fatigue, this book shines a light on the reality of the WHO neurological disease Myalgic Encephalomyelitis.

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FROM ISSUE 33 NEWSLETTER

VOICES FROM THE SHADOWS

Linda has had very severe ME for nearly two decades now; all that time I have been caring for her, trying to find a way to understand this complex physical illness, trying  to counteract its impact, trying to get the right biomedical diagnosis and  treatment for her.

She remembers clearly when she had had it for just four years. It seemed like forever even then, and all she wanted was for the dreadful pain and paralysis to stop. We just could not believe that anyone could be left as ill as her, with no adequate explanation, no proper biomedical tests done,  no clear path way, no adequate understanding of her  illness.

She was in hellish agonising pain and paralysed daily then, along with a host of other serious neurological symptoms, such as acute noise and light sensitivity, spasms and complicated gastric issues.

Sadly, but not unexpectedly, they have not gone away for even one day. There has been no let up from the symptoms, only deterioration.  She did not know how to bear it then and yet she had to. She still has to, but what has made it even harder to bear, for both of us, is the misinformation and psychiatric misrepresentation about ME, that is becoming more and more acceptable, in society and the medical    profession, as the truth.

This illness - Myalgic Encephalomyelitis - is not just a fatigue condition or a bunch of symptoms patronisingly thrown together. It is a serious neurological disease with multi - system dysfunction, which can and does lead in some cases to death. In Linda's case it is utterly tormenting physically, in every moment. Yet down the years she has had to put up with a dearth of proper treatment and respect.

Over many years of extreme suffering and severely disabling illness, she  has been reported as lying about her symptoms. She has been told incorrectly that ME is a form of depression, she was even being misled by a GP in an attempt to get her to see a psychiatric nurse. She has been told she just needed encouragement and reassurance, she has been damaged time and again by professionals not understanding how physically frail she is and she has  been patronised, insulted, misunderstood and left in a  vulnerable, physically unsafe position by nursing staff.

She has had to prove again and again and again how severely ill she is, in order to get essential benefits and had to take out complaint after complaint to get proper, adequate and fair treatment and services.

She has been given inappropriate and unsafe  treatments,  she has  been  physically injured by people whilst  undergoing treatments, she  has been made horribly  worse trying various drug recommendations, she has been refused a service by a GP  practice, she has been  negated , misinterpreted and had things completely made up about her written as fact.

It is impossibly hard to be so ill that you are completely removed from normal life,  as a necessity, in order to cope with the physical torment and dysfunction of your body, and then struggle to find anyone medically who will treat you safely and with respect.

It is exhausting and unjust to have to fight the system to get your basic rights met. It is devastating to see friends and family fall away as contact becomes  unbearable with them and they simply do not understand how to maintain contact or make the effort to learn about the genuine physical reality of the illness. 

Worse is all the damaging untruth that gets published in the newspapers and journals representing ME as a psychiatric condition, which does so much harm to public perception:
¨ the completely inappropriate and utterly inadequate NHS response to ME;

¨ overlooking completely the biomedical response required for this physical disease;

¨ the collusion with vested interests and  psychiatry;

¨ the sheer wrongness and misuse of therapeutic techniques being allowed to charade  as treatments and the validation that NICE has given  the  psychosocial management approach, against patient and most charity opinion and experience.  

Meanwhile, despite the government accepting ME is a WHO neurological disease, it continues to allow the ongoing neglect and confusion with mental health disorders. It does nothing to ensure that people with ME get the proper health service they need, because it refuses to deal adequately with the key issue, that ME and CFS are different, they have different definitions: fatigue illnesses are not the same.

ME is not a syndrome, it is a disease. Yet the government refuses to adopt an appropriate disease definition, that will separate neurological ME from a host of fatigue conditions that are not ME, enabling money to be wrongly channelled away from ME into fatigue services.

There is such power and influence, that over the last two decades when biomedical progress should by now have happened and proper scientific research been conducted, psychiatry has inappropriately invaded and dominated  ME and taken   the funding away from biomedical research, exerting undue influence and causing confusion where clarity is needed.

 There are very few consultants available who know and understand the nature of this disease.  Doctors and other paramedical professions can simply chose whether they believe ME is physical or psychological, because of the confusion and misrepresentation caused by the psychosocial lobby and the un-acceptable power it holds to influence policy and practice.

There is a culture of compromise which means that patients with genuine ME get mistreated or simply get no treatment, in order to avoid being mislabelled or forced to do graded exercise and CBT which will positively harm the genuine ME sufferer.

The treatment of ME in the UK is a scandal.

The misrepresentation of people with ME as having a fatigue condition is a scandal.

The wide scale use of psychiatric techniques and the refusal to provide proper ME medical tests on the NHS is a scandal.

The lack of adequate assessment and psychiatric   definitions is a scandal

The fact that my wife has been left to suffer such  extreme physical symptoms for almost two decades, whilst desperately having to scrabble around year after year to find a GP and a consultant who knows ME is a physical disease is a scandal.

The lack of adequate ME testing or treatments or adequate medical support available is a scandal.

The fact that patients are locked in psychiatric wards and treated abusively is a scandal.

The fact that people die from ME because the medical understanding of their illness is not there, not just because it is a complex disease, but because it has been handed over wrongly to psychiatry, to support vested interests in this country and round the world, is a scandal.

The fact that there are over 5000 scientific papers published to show physical dysfunction, yet the UK government and the NHS still backs the psychosocial model of care in this country is a scandal.

The film Voices from the Shadows was made by Josh Biggs and his mother Natalie Boulton, because they really care about what is happening to people in the UK. They know that people with ME are not getting adequate and safe treatment.

They, and the people in the film, are brave people standing up for truth. They are too few.

Where are the voices of the nation, when it comes to this shocking story of psychiatric abuse and neglect?

Where are the charities who should be speaking louder about the injustices, not compromising away the truth?

Where are the MP's where are the academics?

Where are the GP's and medical professionals, the nurses?

We do not see many. We do not hear them loud or clear.

Instead all that can be heard are the brave voices from the shadows demanding justice, demanding truth, demanding we all now speak out and say we have had enough.

We want respect. We want the truth of this physical disease to be told.

We want the money from the government to be spent on genuine ME research and genuine biomedical clinics, using proper high quality definitions to identify patient participants, not on vague fatigue conditions purporting to be ME.

We want proper, adequate, safe diagnosis and treatment for this neurological disease.

We want neurologists and all health professionals to be expected to know that ME is a neurological disease and provide proper biomedical support, not collude with psychiatry.

We want a proper adequate health system that  accommodates the physical needs.

We want new ME tests and treatments on the NHS to address the physical illness.

 

We want biomedical reports that honour this disease. 

We want a safe, accurate, biomedical ME pathway for the NHS.

We want all the misinterpretation and misrepresentation, the denial and neglect to stop.

We want psychiatry to be removed from ME, so that psychiatric abuse can no longer be condoned or  validated.

We want medical respect for all and especially we want it for this disease.
And we want it now. It is long overdue.

This is why we participated in the film: to speak up about the injustice, so that we might be seen and heard and so that something good and positive and valid might be done to change the treatment and lives of  people  with genuine ME.

Linda is so upset by the lack of true information about what ME is and what it is like. She wants people to see that it is not just tiredness or people thinking the wrong thoughts or not trying hard enough to exercise because they are just deconditioned.

It is not people pretending to be ill or convincing themselves that they are ill. It is not a mental health disorder. 

 It is a genuine, complex, severe, physical multi-system dysfunction which goes on for decades without relief.

With many thanks to Natalie and Josh for making this film. Let’s all do our part now in making change happen.

By Greg Crowhurst

 

 

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From Issue 32 - Winter 2011

The Carer Times
By Greg Crowhurst
June 24th 2011
www.stonebird.co.uk/carernews24june.html

Why symptom management is not enough

Ask a patient group to describe what they want from an ME Service? Typically you might hear talk of a "biomedical"     consultant and "symptom management"; it seems, sometimes, that people cannot see much beyond a cobbled bolt-on         approach to the current fatigue clinics. Our forward thinking needs to be much more aware than that.

Symptom management in ME tends to be about: Sleep, Pain and Fatigue.

· Control the pain ?
· Control the sleep ?
· Pace yourself ?

For my wife, at least, pain control is not possible especially using current drug regimes – she is really drug sensitive. Linda does not just want symptom control; most of her ME symptoms are ignored or not understood because the causes of the       symptoms are not found using standard NHS tests. There are not even proper aids and equipment that will ease her        symptoms such as noise and light sensitivity.

In short, there is nothing being done to address the illness all the time you suggest that a therapy-led  service, and            questionable symptom management, charades as an ME      service.

The risk of people with ME being made more ill needs to be understood.

Linda’s paralysis is completely negated by standard neurology consultation – it is simply unacceptable not to investigate.

The NHS does not pay for supplements as they do not seem to accept they are valid medicine because they can be bought over the counter and not available on prescription.

New tests, not currently available on the NHS need to be    available using world-class Labs, that have expertise in tests relating to ME.

A biomedical Consultant without a biomedical pathway and new tests and treatments agreed in principle, still does not make a biomedical service.

Existing Fatigue Clinics

By all means have a local Fatigue Clinic, but keep it separate from an ME Clinic. If some people want to do pacing, go to the Fatigue Clinic, but do not say that is an ME Service. A Fatigue and an ME service need to be kept separate, otherwise one charades as the other.

Use of mental energy is as dangerous as use of physical energy for people with post-exertional malaise. CBT is potentially as dangerous as Graded Exercise, especially for the Severely   Affected. Some people might want it, to help them cope, but the way CBT is used in the UK is not as a coping mechanism, but as a strategy to deny your illness.

If you offer CBT at a fatigue clinic, that is fine. If you offer CBT as a treatment for ME, it is fundamentally wrong.

New Service, New Tests, New Treatments

A fundamentally new service, with new provision, needs     commissioning and agreeing. Biomedical pathways need to be set up to ensure that tests and treatments and practitioners new to the NHS, can be brought in, and that the tests can be safely interpreted by people who believe and know ME is a multi-dysfunction neurological disease. Treatments resulting from interpreted tests need to be paid for by the NHS.

So much more than symptom management is required - the disease process and dysfunction in the body needs to be       identified if possible, or at least  attempted. People with ME need adequate medical reports stating their dysfunction and an honest prognosis, rather than pretence that they will get better for no reason with no appropriate biomedical interventions.

 
A very important point is that treatment and support need to be ongoing with no financial pressure to kick people off the books if they don’t get better, and no expectation that the inter-ventions will cure, but that people’s suffering needs easing and that new answers need seeking!

Components of an ME Service

· A biomedical ME aware Consultant.

· Commitment to new biomedical tests and treatments. Both ones currently available on the NHS, that are not    offered to people with ME, such as PECT scans, T3, but also new tests, for example mitochondrial functioning, LYME disease, Pesticide tests, Gut tests, from new labs, such as Acumen, who are world leaders in this field, and access to the expertise of the Breakspear Clinic, who are leading the way in looking at health and ME and new biomechanical interventions, such as the Perrin Technique. There is expertise that the NHS can draw upon, if only they are open to it and it is this openness, to the new that is required; to look at the physical, underlying process of the physical dysfunction, not just mask it by pretending to offer              management of symptoms, while focusing only upon three - one of which is not specifically relevant to ME – and pretending that is an ME service.

· Clinic facilities that are appropriate. To ensure the     environment is as ME–friendly as possible, by providing quiet areas, room for people to lie down, flexibility of    treatment times, awareness of Multiple Chemical             Sensitivity.

· For the Very Severely Affected, there must be a home-based service, with Consultant visits.

· Training and education for all NHS staff. Staff need to be educated in the risks and dangers of working with anyone with ME. The NHS must accommodate the complexity of working with these patients to ensure safety.

· Accountability for clinicians and staff who continue to ignore, negate, deny, downgrade, not meet, through        ignorance, the biomedical needs and the WHO definition of ME as a serious neurological disease.

· New aids and Equipments developed, offered, to patients with ME, that reflect the very real environmental assault that these patients experience. For example, provision of suitable ear protection against noise, seating and bedding that will provide the necessary levels of comfort for someone in acute, constant pain, who can   never get physically comfortable. Help with Light Sensitivity. Looking at the neurological symptoms, advice on MCS and how to deal with it within the household. A knowledge base of what is safe and recommended for people with ME. Dietary and nutritional advice for very complex gastric and food        sensitivities and allergies. Automatic referral to specialist physios regarding wheelchairs. Training of  specialist OT’s.

· Home dental service for the very severely affected.   Travel is an issue, chemicals are an issue, mercury is an issue - non-mercury fillings are not available on the NHS, but should be as a health issue in severe ME. Anaesthetics – need to be non-adrenalin. There is currently a gap between dentistry and medicine that people with ME fall into – there needs to much better direct communication.

· Home optician service.

· Wider Health needs that go unmet because of the       inability to access health services as they are. A willingness for other Consultants to visit people with Severe ME at home. A total relook at how to meet the needs of the housebound, without putting their health at risk by having to go and see Consultants who do not understand the issues – and countless missed appointments. Yet the health needs remain an issue.

· For the Very Severely Affected there needs to be direct access between GP’s, Consultant’s and Patients, to    discuss health issues as they arise, quickly. The whole procedure for communication needs looking at.

· Personal Budgets are an excellent way forward. There has to be a commitment from the NHS to rethink its views on Nutritional Medicine for ME, which are actually        treatments not just supplements. People with ME are      depleted of various essential vitamins and minerals, etc.    These are treatments the NHS should be providing, because they are essential to health, different than the ordinary    public taking supplements as a dietary addition.

· Link to current Research and the ability to adjust to new evidence and new findings.

· A specific medical pathway for ME, so that patients do not have to be referred to an Individual Funding Panel.

What the norm should be for people with ME

Some ideas, in no particular order:

Ø Every GP, Nurse, Consultant, Practitioner should know that Myalgic Encephalomyelitis is a serious WHO disease, with multi-system dysfunction and that any intervention has the potential to make the person more ill.
Ø Drug sensitivity is a real issue.
Ø Very Severely affected patients will require home visits.
Ø The way you approach someone with ME can  either      maximise or minimise the effectiveness of the appointment.
Ø Everyone needs to know that perfumes make the person with ME more ill and should not be worn, when seeing someone with ME.
Ø The loudness of your voice can exacerbate noise sensitivity.
Ø Questions and information can be too complex for someone with cognitive dysfunction to understand and process.
Ø Even examining someone with ME can be dangerous- staff need to understand this.
Ø You might need to speak more slowly.
Ø You need to be flexible, set longer appointments, because of the physical issues and communication difficulties.
Ø Even if someone appears to be able to do something in one moment, their overall reality may be more complex. There will always be a post-exertional impact with ME. The    severely affected particularly, will have a massive negative          response to any intervention or contact.
Ø It’s important to respect the way people communicate.
Ø An understanding of how hard it is for a person with ME to be in a normal environment, in a normal interaction.
Ø The person should have access to all services without     worrying that their health will be harmed, through           ignorance, negation and denial.
Ø All of their health needs will be taken into account in any hospital situation they find themselves in, whether Out or  In-patient .
Ø Your health should not be put at risk because people do not understand your illness or accept your level of physical   dysfunction.
Ø The motto of a new service should be safety and respect.
Ø The biopsychosocial approach needs to be completely    eliminated for this to happen.
Ø You have got to stop using the "CFS" label for ME.

Ø The Consultant’s clinical biomedical judgement should  always be respected, in regard to new biomedical treatment recommendations.

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Rescued

Where do you start when you don’t normally write or get involved with the ME community, however here goes…   I would like to tell my story, or should I say our story, after caring for my wife Christina for 35 years.

I am 62 years of age, we have a son, Paul, and it is probably not a coincidence that Chris became ill   almost immediately after he was born following complications. Things were different then, no       paternity leave, I had to look after Chris using up my holiday entitlement, Chris upstairs, me with a baby reading the instructions on formula milk. Chris had gone to all the antenatal clinics, what good was that to me now! I couldn’t even put on a nappy, terry towelling in those days. I remember going next door as they had a 4 or 5 year old little girl and thought they would be able to help. However, after several attempts with the nappy she returned with her   daughter’s doll and told me to practice on that. I went back to work as a draughtsman at Leyland Motors and things became almost normal.

Fast forward about 5 years and Chris was offered a job as telephonist/receptionist at a company in the village but within a short period of time she could hardly walk or do much, so the medical nightmares began with referrals to Psychiatrists, Consultants etc. with comments like, “Have a good holiday, that will do you good,”  “What do you expect me to do, as a mother you shouldn’t be trying to work as well!”

To be honest I probably made things worse. In hindsight I did make things worse, by saying, “Try to walk a bit further every day.  The less you do the less you are able to do.”

I now know how wrong I was. On rare occasions when we were able to have friends round Chris couldn’t even hold some dominoes in her hands. I don’t think we even got a diagnosis of ME until 15 years later.

Moving on 20 odd years, we have few friends left and I do understand how utterly boring we must have become - no loud music, no strong perfume smells,   sorry I may have to lie down after half an hour, we didn’t invite you because we know you won’t be able to come etc. - what is the answer!

About 10 years ago the neighbours invited me to the local for New Year’s Eve, meal and drink etc.,  however, after an hour or so I just burst into tears and had to leave, I just felt so alone being there without Chris.

Description: barney april 11The last Chapter, about 4 years ago Chris decided she wanted a dog and daily regaled me with features of unwanted pets, emailing her online friends, most of whom have ME, saying (which was true) that I wouldn’t give in and that I had enough to do with cooking, shopping, going to work etc. etc, and the last thing I wanted was a dog to walk as well.

I managed to keep the barriers up until one of her online friends sent her a link about a Patterdale    Terrier who just happened to be in kennels not far from where we live. Slim Jim, as he was called, had been used for badger baiting, had mange, had been kicked and his ribs were sticking out and apparently he was rescued by the RSPCA with prosecutions etc. After a few weeks of persistent nagging we did go to the kennels and the rest is history. We were a little concerned that he would be too damaged mentally and mentioned this to staff who said we could foster him to start off with. After 2 days at home with him we decided we couldn’t send him back to those stone cold kennels so we rang up to say we would keep him.

Later in the year we decided to have a little break in North Wales, our first for over 20 years. Chris would not be able to go out even if we managed to get there. It does take about one and a half hours to get there, if well planned, but we thought if we could find somewhere with a sea view and who would   accept a dog, then it might just be worthwhile. Well we got there in the end, an apartment with sea views where Chris could watch myself and Barney (his new name) go for a walk and play ball and she would ask who was that couple you were talking to.

I decided whilst in Llandudno I would visit Bodnant Gardens as I had heard it was one of the National Trust treasures. I rang to ask if I could take Barney but was told no pets. I decided to go anyway and found the place delightful. However after about an hour or so I can only describe me as having a ‘New Year’s Eve moment’ - no matter how beautiful the place is on your own it’s just not the same. I decided there and then if I can’t take Barney I’m not going!

We have had Barney about 4 years and managed to get to Llandudno a few times since, and I can say we are inseparable. He has his problems with skin etc. but the pleasure we have had seeing him go from a wreck to what he is today, lively, full of fun,         mischievous and an absolute pleasure. We go out every day usually to play ball, we see a few new  faces and to be honest I feel happier in myself.

 

Why did it take so long for me to be rescued??

Description: TEW03004828_00125 H n barney 

 

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25% ME Group Adult Care Services Survey

Family Carers Analysis Report

100 people with severe M.E. participated in the 25% ME Group adult care services survey. Respondents ranged in age from young adults to pensioners, and resident in locations throughout the UK.  Most had been ill for many years. Not surprisingly, family and voluntary carers emerged as a vital source of care support. Seven out of ten respondents (70 people) were receiving voluntary care assistance, normally from family, and for just over a third (n=38) family were the sole care providers. 

Overview of Carers' Responses

Just over half of the questionnaires received [51] included a completed carers’ section.

These illustrated a wide range of family circumstances and care scenarios, from young adults who had had severe M.E. since childhood receiving intensive care from parents, to elderly people coping with their own deteriorating health while struggling to provide adequate care to meet the care needs of a spouse or son/daughter with severe M.E. There were also instances of young people looking after sick relatives.

¨ 15 had received a carer’s assessment, of whom:

™  13 had been provided with assistance following assessment;

™ 2 had received no respite support from social services; however one of these carers now receives help from a voluntary organisation.

This meant that 14 carers were receiving some form of support.  However, only 4 felt that they were receiving all the help that was needed.

¨ The remaining 37 were shouldering responsibility for care without any form of carers’ support.  This group encompassed a range of expressed needs, from ten carers who indicated that they did not feel that they required any support, to a similar number who indicated dissatisfaction that there was no service – or no suitable service – available to meet their needs.

 

Carers' Experience of Support Services

How Long Did You Have To Wait For Respite/Help From The Carers' Assessment Stage?

1 – 4 weeks:            7         

4 – 8 weeks:            3      

more than 2 months:           2

(13 ‘successful’ assessments; 1 non response: n=12)

 

What Type Of Services Do You Receive?

(some carers received more than one type of service)

Short break services (respite):

 in the home                                                   9

where the person with ME stays in a care home      2         

Other services:                                                          

carers’ flexible break grant; member of          1

   carers’ link                                                  

short break vouchers, used for domestic help 1

can phone carers’ resource – that’s all            1

meals given to patient                                     1

2hrs cleaning & ironing                                  1

 

Feedback about these services:

Remarkably few had access to respite care where the person with severe M.E. stayed in a care home.   Some highlighted the lack of any suitable option in this regard, for example:

 

* “There is a real lack of understanding of the needs and limitations of severely affected ME sufferers on the part of social services ... The only respite care offered is not suitable for severely affected ME sufferers e.g. nursing homes (over 65), learning disabilities etc.” [Sussex]

“Don’t receive all the help needed due to lack of funds and also wife’s condition – she can’t tolerate noise.  I am allowed to ask when I need it, or talk to a carer’s social worker. (Care package)  … enables me to have some independence – seeing friends, attending own medical appointments. I am 75 years old. My own health problems are receiving ongoing help – memory problems can cause severe difficulties but using more ‘notes’ to help this. Carer’s outreach have been sent to me + I have talked to my own social worker re problems. Have received respite services in the home, and used to get respite where person with ME stays in * care home, but difficulties taking up these services. Quiet room in care home is no longer available locally for wife due to change of use of home.”  [Conwy, Wales]

* Another person with severe M.E. reported  “Have been in respite. Didn’t like it. Care was poor.” [North Wales]

 

One carer noted how difficult uncertainty around provision of short breaks service at home was for her:

“Short breaks service gives me 4 hours per week. This has been under review for about 15 months as the council want to halve the service because of cost involved. No decision has been made … Stress of not knowing the outcome is extremely wearing.” [West Dunbartonshire, Scotland]

She was caring for a woman aged 35-45, who had been severely ill with M.E. for over 20 years and clearly required a high level of care. Although social services were providing some care support, she had requested a cut in hours: “…as I couldn’t cope with someone in my home for long. My mum knew my condition and I preferred having her tend my needs.”

Against this background, short breaks service had been introduced to help meet carers’ needs.  Her carer also observes: “There is a huge difference in support from social services for learning difficulties adults and physically disabled adults. Only one scheme caters for 2nd group and it’s very limited by funding shortage/staff shortage.”

 

For How Many Years Have You Been Receiving This Service?

0-4 Years        8

5-9 Years        4

10-20 Years    1

(14 receiving service, one non response; n=13)

 

Are You Satisfied With The Quality Of The Service That You Receive?

Yes                  10

No                   3

(14 receiving service; one non response here: n=13)

 

All carers were asked: Do You Think That You Have Had Enough Information About Care Services That Are Available To Help You?

Yes                  9     

No                   21

Don’t know     9

(51 carers; 12 non response: n=39)

 

Just over half of those who responded felt that they hadn’t had enough information (54%). An equal number of the others replied ‘yes’, and ‘don’t know’.

 

Carers' Role In Community Care Assessment

Carers might play an important role in supporting a person with severe M.E. in the process of Community Care Assessment. For example, eleven Community Care Assessments had been instigated/arranged by family or friends.  And informal carers could also help by being present during the Community Care Assessment.

 

Ø Several respondents had been too ill to be involved in the assessment any way, and had been represented in the course of their assessment by family or an advocate. 

Ø Around half of those who had been involved in their assessment had had someone with them while being assessed. In about half of these cases, that person had felt that they were listened to by the assessor.

 

Refusal To Provide Care If Family Carer 'Available'

Unfortunately, the presence of a family carer in the home could mitigate against the provision of any care to the person with severe M.E. from social services.  Several respondents described such situations. For example:

Ø “Was only given help because my husband and carer broke his leg – care package ended when he could walk without 2 crutches. Would never have got any help otherwise!”[Northern Ireland]

Ø “I did ask for help from social services but was assessed as only needing help with housework and shopping - my husband was helping me with other things. I think as my husband was my carer they didn’t consider I needed other care help although he was working full time. They stopped providing this type of help about 10-12 years ago so I now get housework etc. done privately.”  [Greater Manchester]

Ø Care was stopped because my youngest child had just turned 4 (school age) therefore I no longer need help! Plus lack of funds. The M.E. did not stop simply because our son reached school age. We asked again several times, but were refused as there were ’no children involved’.  So who did they think would do the school runs, shopping, washing, cleaning? – a 4 year old should walk home alone and prepare his own meals because his mother was ill in bed! We paid for private child minder, and still pay for private domestic help.  The carer has to hold down a full time job.” This woman has had no care service for 17 years. [West Midlands]

 

Other Carers' Issues

Elderly Carers: Lack of awareness of services & no longer eligible for Carers' Allowance

Several elderly carers highlighted an inequity in that people of pensionable age don’t qualify for Carers’ Allowance. Also, lack of awareness of the existence of care services and disability benefits and carers’ support services was notable among elderly people.

For example, one elderly carer, living in Herefordshire, commented:

“I receive a state pension, so don’t qualify for help.”

The person being cared for is also aged 65+, and had been severely ill with M.E. for over 20 years. They report: “The only service I get is from my partner. I’m not aware of any other help being available. NHS Dr came in response to my claim for DLA & Mobility Allowance”

This DLA assessment had resulted in receipt of care component at the low level, despite the person being bedbound. Other than this, this elderly couple appear to have had no assistance to meet care needs at any time.

Similarly, one elderly mother reported:

“I care for my daughter (aged 56), who needs full time monitoring. I am aged 82, so I don’t receive carer’s allowance.” [Sussex]  

Her daughter had initially been assessed to receive care services. However, service had subsequently been withdrawn on review, citing lack of funds, with the result that they were now paying privately for assistance.

Another elderly carer spoke highly of her experience with statutory services and appeared to have been granted the care assistance required, and supported by health service staff. However, the stopping of carers’ allowance had produced an understandable sense of grievance:

“Excellent, understanding care manager & OT. But unhappy carer’s allowance has ended now that I receive a state pension.” [Devon]

 

Experience Of Care Services Operating As a Barrier To Carers' Seeking Support

Some feedback illustrated how struggles to achieve care service for a person with severe M.E. could deter their family carer from seeking support, for example:

“Haven’t asked for carer’s help because doubt anything would be forthcoming. Hard enough to get what we did.” [Kent & Lincolnshire] 

And Finally ...

Some feedback shed a harrowing light on the experiences of carers’ and the people they cared for. For example:

* Person describes their condition as: “Very severe ME 100% ‘bedlocked’.”   They had lost the support of their partner and were now entirely reliant on care from social services.  This loss of partner and carer was directly attributed to lack of cares’ support: “my former partner 2000-2005 – NO HELP OFFERED OR GIVEN EVER DESPITE YEARS OF SUPPORT TO ME. HENCE ‘FORMER’ PARTNER.” [Surrey]

* “I am 18 years old. I’ve looked after my auntie every night for 5 years. My auntie asked social services for respite for me to have a break but they said there was no funding for this purpose. I dare not leave my auntie (who is very severely affected) in case she falls over. She can’t do things for herself. I feel my auntie is treated bad and is invisible to most people.” [Yorkshire]

 

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From Issue 30 - Winter 2010

The Apprentice: M.E. Carer Style
By Greg Crowhurst, October 8th 2010

It‘s a format that is screened all over the word.  A TV show where a group of incredibly ambitious 20/30 something’s try to convince a wealthy business man to take them on, as an “apprentice” for a 6 figure salary.  I wonder what the show might be like from an Severe ME Carer perspective:-

” I am unique.” : I will work for nothing, 24 hours a day, seven days a week.

“I am a go-getter.” : I will take on the full force of the Global Medical Insurance Industry that is doing all it can to deny you recognition and treatment.

“I make things happen.” : I will spend a whole day, helping you get from bed to chair.

“I am not all talk… I can manage a team of people, total strangers even, because I am feisty and have attitude.” :   I will find a way to work with other stressed-out and incredibly ill people with ME, and other Carers, in order to make things happen for you, like a doctor’s visit.

“Caring is the new rock ‘n’ roll and I’m Elvis Presley” : I will never cease, even after decades, to try and think to ways to ease your pain, to bring you some comfort, to search for a things that might help you get through another day.

“For me caring is about hard-work, attention to detail, being willing to make mistakes and learning from these mistakes.” : I will get it wrong, often, because you are so sound sensitive, so touch, so light sensitive, so tormented, so close to screaming in agony, even so I will try and learn the best way to flow with your tiny scrap of energy.

“I knew I would be selected, not to sound big-headed…I’ve succeeded I the companies I’ve worked for because I work hard and I’m honest.” : I will use all my life experience, professionalism, learning, every ounce of creativity, every single talent I possess, to deal with, to cope with, to help you get through, second by second, the unspeakable, never-ending torment that you are in.

“I’m at the top of my game.” : I love you more than ever, I have grown immeasurably as a person, I have come to learn what is truly important, I live now in six-figure moments.

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FROM ISSUE 29 OF THE QUARTERLY

Carers’ Information
Contact With Other Carers

Carers can become isolated so it's important to have contact with the outside world and time for yourself. There are groups and events you can go to or you could join an internet discussion forum or weekly telephone chat.

Your Local Council
Your local council may list local carers groups. Look in the phone book to contact the council or visit their website.
Internet Forums and Message Boards
There are several internet discussion boards and forums for carers. Some are for carers of people with specific conditions, such as Mencap's 'Share' forum for the families of someone with a learning difficulty. Others are a place for carers generally to share their thoughts and tips with each other.
Use a search engine to find more forums, or your local carers' groups may be able to recommend some websites.

Carers UK Forum: www.carersuk.org
Discussion board - Princess Royal Trust for Carers: www.carersuk.org
‘Share’ forum - Mencap website: www.mencap.org.uk

'Making Contact' Service

The charity Contact a Family provides the 'Making Contact' service. It offers the facility to find and get in touch with others who are affected by the same or similar disabilities or medical conditions as you are. Being able to contact someone who knows what you are going through can be a big help.
The website lists a large number of medical conditions and disabilities and has many people signed up and looking for contact, so it could help you find the people you are looking for.

www.makingcontact.org


Ring Around Carers
The BBC and Community Network run a service for carers to have a chat once a week on the telephone. No special equipment is needed - just a phone.
Sometimes leaving the house for an hour to go to a carers group or social event just isn't possible. Ring around carers chat on the phone for less than an hour once a week with other carers. It's easy and it's free.
This service is not available in all areas, so contact your local BBC radio station to see if they take part.

Find your local BBC radio station at:
www.bbc.co.uk/england/radindex.shtml
or Community Network website at:
www.community-network.org

Organisations and Charities for Carers
There are many organisations and charities that offer services to carers. You can find contact details for some of them in the 'directories' area of .http://www.direct.gov.uk.

Support Services
This article deals with the support available to you as a carer, both in the short and long term.
Day-to-day support services could allow you to go to work or take a break during the day. They could also help you when the person you care for needs specialist care or a substantial amount of looking after.
Although you access their services through your local authority, social services may work with other agencies to provide different types of support - for example, charities and private sector organisations.

This can include:
• providing support at day centres
• arranging and providing home care help
• finding a more suitable home for the person you care for
• providing and arranging residential care
Day Care Centres
Many parts of the country have day care centres. They will benefit both you as a carer and the person you care for by giving you both a break. Day centres provide a range of care services for people with different disabilities.
The needs assessment of the person you care for may state that visits to a day centre are part of the support that they, and you, receive. In this case, your local authority must make sure this happens.

You can find information about local Day Centres from your Local Authority or Council website.


Help at Home
There are many ways you can receive help at home for the person you care for. Home care workers who provide this support have differing roles too
Care assistants carry out tasks like cleaning, shopping and preparing meals.
Domiciliary care workers provide 'personal care', for example helping someone go to the toilet or get washed and dressed.
You may be able to choose to employ people to help with care at home on your own. You should seek advice from your local authority or local support organisations.


Care Homes and Care Homes With Nursing
Care homes are for people who can no longer cope at home and need support with their personal care. Some can offer short-term stays to the person you care for, to let you have a break. Often they are for more long-term or permanent care.
Care homes with nursing offer support for people whose illness or disability means that they need nursing care on a regular basis.
Care homes can be run by your local authority, private companies and voluntary organisations.


Find Out About Local Advice and Support for Adult Carers
Your local authority is the first place to turn for support and advice about caring for someone. To find out more from you can visit your local council website at http://mycouncil.direct.gov.uk or contact your local council by telephone if you prefer.

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FROM ISSUE 28 OF THE QUARTERLY

YouGov Poll Ranks Carers Alongside Nurses and Firefighters
and
Carers Week Research Highlights Carers at Breaking Point
A survey conducted by YouGov questioned over 2,000 members of the public about their beliefs and attitudes towards carers.  The key finding was that the public rank carers alongside the emergency services in terms of their contribution to society. Six out of seven people (86%) believe that carers make a valuable contribution, behind only nurses (91%) and firefighters (90%)

The overwhelming majority also agree that carers’ benefits are far too low, with over three-quarters (76%) stating that the current level of Carers’ Allowance is unreasonable.  But when asked to estimate the number of carers in the UK, 8 out of 10 were unable to pick the correct figure of 6 million, with almost three-quarters (71%) underestimating by over 4.5 million.

Meanwhile a Carers Week survey highlighted the shocking number of carers who have been pushed to extreme levels of stress and depression as a result of caring.  The results also revealed that carers feel they go unrecognised or ignored by different groups in society, and this has a significant negative impact on their lives.

Large numbers of carers say they have been pushed to extreme levels of stress and depression as a result of caring. Almost three-quarters (74%) of carers say that they feel that they have reached breaking point.

Over a third (41%) of carers stated that ‘frustration with bureaucracy’ pushed them to breaking point, often the complex and lengthy procedures for welfare benefits, healthcare and social services. Other factors include a deterioration in the health of the person being cared for, lack of sleep and financial worries.

For most carers, ‘practical support’ would – or did – make the difference when they were at breaking point, with ‘just having someone to talk to’ a close second. Nearly a third (31%) say that more money would make a difference – hardly surprising given that Carers Allowance is the lowest benefit of its kind at just £53.10 per week.

A massive 8 out of 10 carers feel that their role is overlooked or ignored by professionals, who include GPs, social workers and hospital staff. Three-quarters of all carers also feel that their role is unrecognised by family members and friends. Almost two-thirds (63%) of carers say that their lives are made ‘much more difficult’ as a result of being overlooked or ignored.

More than half (54%) say that being overlooked has affected their health and a slightly higher number (55%) say that it has left them worse off financially. The ten charities who organise Carers Week are calling on the Government to do more to support carers, along with other organisations such as the NHS, improve carers' lives.

Fieldwork for the YouGov survey was undertaken between 5–7 May 2009. The survey was carried out online. Total sample size was 2,109 adults. The figures have been weighted and are representative of all GB adults (aged 18+).
1,941 carers took part in the Carers Week survey, both online and by post, which was carried out between 22 January–25 March 2009.

 

Respite Carer

When you are taking care of somebody you also need to think about caring for yourself. Depending on the type and intensity of care needed, your own health and well-being can be compromised by looking after someone else. In most jobs you get paid holidays - you should try to take some time off from caring too!

You can get some respite from your caring role in a number of different ways:
1. Residential respite: The Person you care for goes away to be looked after by someone else for a while – residential or nursing care or on holiday.
2. Domiciliary care: Someone comes into your home and takes over care for a while (a few hours or sometimes overnight) so you can go out or have some time to yourself.
3. You can sometimes get a break when the person you care for is involved in other activities – for instance at school, at a Day Centre.

Assessment of eeds by the Local Authority

The first step is usually to approach the local authority to ask for an assessment for the person you care for – and for you as his/her carer. The Local Authority social worker doing the assessments will consider the needs of the person you care for, and your needs as their carer, and consider what services they may be able to provide (bearing in mind local priorities and availability of services). They will also do a Financial assessment under their Charging Policy which means that you (or – more usually – the person you care for) may be charged for the services according to means.

For example: David cares for his son Michael. The Local Authority assessment identifies the need for Michael to spend some time with people his own age – and also for David to have some regular time off and a good night's sleep. The Assessor recommends that Michael should attend a Day Centre for 3 days a week and go to a residential unit 4 times a year.

Recent legislation (‘Carers Equal Opportunities Act 2004’) gives carers increased rights when their needs are being assessed. A carer's wish to work, undertake training or leisure activities should be taken into account as part of a carers' assessment. Make sure that the person doing the assessment understands what sort of help you need to enable you to have some life of your own.

Vouchers

Instead of organising services directly, Local authorities are now able to give people vouchers which they can redeem with local services they choose.

For example: Jean looks after her husband Geoff (who has dementia) 24 hours a day. They are allocated eight hours a week of respite care. Instead of arranging this with Care Watch (a local agency), the Local Authority gives Jean vouchers for 32 hours a month of care which she can redeem flexibly with whatever agency she likes at whatever time is best for her.

Direct Payments

In this case, the Local Authority works out what services they think you may need and then, instead of arranging the services, gives you (or the person you care for) the money to buy the service directly from an appropriate agency or person. You could then use the money to employ somebody directly yourself if you wish. See the Department of Health Website for more details.

For example: Sue looks after her mother Daisy and also has a part time job. She can leave Daisy for a few hours on her own, but needs to arrange for someone to come in at lunch time. Sue also needs to have a complete break. After assessment Sue gets direct payments to enable them to buy in appropriate help. Sue is able to employ Jenny her neighbour for an hour a day to prepare lunch for Daisy. Jenny also agrees to move in to look after Daisy for two weeks. Sue uses the direct payments to pay Jenny. This works well for everyone, and particularly for Daisy who knows and trusts Jenny.

Some voluntary organisations also provide respite services. Crossroads Care is a charity which has a network of local schemes providing respite in the home, using trained staff. Many Crossroads schemes do not charge although there is often a waiting list for their services.

A small number of the Carers’ Centres that work in partnership with The Princess Royal Trust for Carers directly provide respite care - whether or not they provide this service they can give you information and support about what is available locally.

Holidays

There are a number of organisations that provide opportunities for children with special needs or people with disabilities to go on holiday with appropriate support provided.

Some, such as Vitalise, provide special weeks for carers to go with the person they care for. A change of scene can be very therapeutic if there is appropriate support available to help you to enjoy it.

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Carer’s NewsFrom Issue 27

carer_imageCarers’ Information

An ME/CFS Carers Guide
by Carer, Trevor Wainwright.

A practical guide to caring for people with M.E. based on my experience. This is a strategy arrived at through trial, error, frustration and patience. What I have learnt has been by listening to the experience of others in the same situation, who have looked after sufferers among their own families and friends.

The cardinal rule is, believe in their illness Try to remember how you yourself felt when you had an illness and remember that they feel 100 times worse, and that there seems to be no end to that feeling and pain. Lots of patience and understanding are required. Try the best psychological treatment; simply say "okay I believe you, now how can I help you?"

Love and support at all times Remember they know how they feel at any given moment, help them get through the illness as best you can. It ’s very difficult for the carer to cope but even worse for the person suffering from ME. It doesn’t just affect them, it affects the whole family, you have to change your life to fit in with the illness. You may want to give them a cuddle, they may not want it. However upsetting for you, you must accept that sometimes they want to be left alone. Let them come to you, always be ready. Remember, ME is a serious physical illness, and a sufferer ’s physical and mental states can change very quickly but they are still the same person underneath. Encourage, but do not force them to talk about the illness and how they feel, but take care not to over burden them with your interest. At all times try to keep your sense of humour, it can keep you going through many bad and frustrating times.
Learn all you can about the illness G.P.s are busy people. Many do not have the expertise or the time to deal with M.E. Ask to be referred to a regional clinic (e.g. Leeds or Sheffield). Sadly most of the NHS support is based on management and coping strategies. If there are different doctors in the practice find one that is understanding of the illness. If not, move to another practice. Remember they are there to serve you. Certain private doctors may provide a better service. Visit your local library, they have many books on the illness. If not, ask and they will order them for you. They will also have internet access, a source of much useful information, but beware, there is no guarantee of the accuracy of this, join internet discussion lists and chat groups. Listen to others’ experiences and suggestions, but do not force their experiences on the sufferer. The illness is as individual as they are. Support Groups, either local or national, can be useful for information. Contact them, make the first step, if you think they can help, use them, if not try another. Remember many groups are run by sufferers themselves.

Treatment issues Listen to the sufferer, as they in turn must listen to their own body. Treatment is a lottery, and what works for some, may not for others, so the only realistic option is try it and see. Do not be put off trying alternative therapy. Give it a try - if it makes you worse or there is no improvement you can always stop it. Some mental health strategies have not been found as helpful as some practitioners would hope. Family support and belief is often better, far better. Remember that as a carer you may be the sufferer’s only friend. Be prepared for social isolation.

Education By law, children have to be educated, but do not have to attend school. LEAs must provide suitable education to match the needs of the pupil which may be home tuition. The doctor or paediatrician can help to secure this but you may need to be persistent.

Further Information What is described in this article is not exhaustive. You are not alone, there are many others. At all times remember though, it is the sufferer’s wishes that are paramount . Do not force, but encourage, do not drive, but lead, do not demand, but ask. You can give much to a sufferer, and always remember, the best you can give is Support and Love.

Website Aims to Identify and Support Carers A website has been launched to help professionals who work with unpaid family carers. The website, developed by the Princess Royal Trust for Carers (PRTC), offers specialist information for those who work with carers in the health, education and social care sectors.It can help professionals identify and support unpaid adult and young carers. Many young carers do not recognise themselves as such, but often suffer because they are frequently absent from school, don’t have time to do their homework and can be bullied.PRTC currently helps almost 50,000 carers in Scotland – including 3,500 young carers – cope by giving them information, support and advice through its network of 29 carers’ centres, 49 young carers’ services and interactive websites.Young carers are those under 18 who help family members and friends carrying out tasks usually  done by adults – such as looking after the rest of the family, helping their loved one and ensuring they take medication. This can affect their school life and their friendships.

To view the new website visit:
http://professionals.carers.org/

·      For up to the minute Carer’s News visit the Severe ME Carers website:

http://stonebird.co.uk

·     Confusion over'jobs for carers'

     From Mid April the DWP has been sending out letters requesting carers to attend interviews at job centres.The work carers do saves the UK billions of pounds. Carers are very angry indeed about the DWP's move.

·     Read  the new Carers BILL

   I am delighted to announce that carerstogether is now a registered NICE Stakeholder for the Chronic Fatigue Syndrome - ME Guidelines. We have a voice!

·     Carers Pack 2005:

     The revised and fully updated Carers Pack will be available from July 1st online and from the 25% Group.

Topics for Future Articles

*    Carer's Needs - are they being met ?

*     Carer's Assessment - how did you find it ?

*     Carer's Achievements - political, educational, creative - inspire others !

We'd love to hear from you.

 

Carer Training & Development

LEARN4LIVING is currently being piloted by City & Guilds. The course, which can be accessed through the internet, is designed to meet carer’s needs for training in personal development and confidence building and can lead to the equivalent of a GCSE.  More information in the next issue.

 

Help For Carers

Thanks to two pieces of legislation – the Carers (Regulation and Services) Act 1995 and the Carers and Disabled Children Act 2000 – people caring for disabled relatives, neighbours or friends can now expect certain services from their local council.  (The latter Act is not applicable in Scotland).  

As a carer in England and Wales, you can now ask for an assessment of your needs as well as those of the person being cared for.   You may be able to get help with respite care or other support. Respite care is helping look after the person you care for while you have a break. 

For details on how to get it, contact your social services department.  To contact your social services department look under the name of your County Council, Borough Council or in some areas, now Unitary Authority, or London Borough.  You may be able to find out about other local organisations that can help from the phone book, your local library, the social services department or a doctor’s surgery.

Carers National Association:

0808 808 777 Mon-Fri 10am to 4pm

Address: Carers National Association,

20-25 Glasshouse Yard, London  EC1A 4JS

Carer’s Story

By Greg Crowhurst

MRC : ME Research Controversy

I have got about an hour. It's an early Thursday morning and a world away people are going to work, grabbing breakfast, starting a new day. My wife Linda is asleep. In about an hour I will do my best to help ease her agony. For if the last eleven years are anything to go by she will awaken in a darkened room paralysed and totally in pain. Her face will be drawn and palsied down the left side. She will shake and gasp in awful thirst. Very gently, in whispers - for any noise is devastating, I will try to help her. I will probably get it wrong because even now, after eleven years of it, I don’t really understand the full extent of her suffering; how even the softest, most loving touch hurts. Did I say eleven years? That’s a lot of mornings. That’s a lot of time with no treatment, no relief. That's a big chunk out of a career. That’s a quite a bit of time surviving on benefits, living in isolation, fighting for just to be acknowledged for God’s sake. Somewhere out there a whole bunch of psychiatrists are probably climbing into their BMW Series 5's as they too begin this new day. Me and Linda, we’ve spent the last eleven years surviving; because that’s the best you can do with Severe ME at the moment. Professor This and That meanwhile have spent the time building a nice little career thank you very much, cheekily suggesting that if only people like Linda could change their beliefs that they are ill, then.....I am searching for an analogy here, you know when you can’t get rid of a particularly annoying pest;  something  loathsome that crawls out of woodwork ... I don’t know, but I hope you get the picture, for that is how this carer - and I suspect I’m not the only one,  views the Cognitive Behaviour boys. It wouldn’t be so bad if they’d just gracefully admit “it’s a fair cop guv!” Okay you’ve done alright on the back of the likes of Linda with your mad ideas and theories, now just go away and leave us alone !Will they heck!! Those blighters have only gone and grabbed for themselves £11 million quid. Eleven million pounds of our money!! £2.5 million for the Mighty Rich Con (Medical Research Council) scam and the rest for a hoary horde of psychiatrists to staff those ME treatment centres. If you and I had eleven million pounds, I wonder what we’d spend it on  :

·     It wouldn’t be our first thought to spend it on someone to come out and  put our loved one through their paces with  90 minutes of Graded Exercise “Therapy”.

·     It just wouldn’t occur to us to send for a psychiatrist anymore than we’d expect a shrink to turn up and ask us if we’re sure,   if we’ve broken down by the side of the road.

·    We would say “you’re having a laugh” if a man in white coat asked us to spend £2.5 million on a Missed Real Chance; that specifically excludes those suffering from ME !

You and I , we wouldn’t waste time faffing around. We have the overwhelming evidence of our own eyes to go on. You see, unlike the MRC mob- we believe in ME !!We’d blinking do something so revolutionary it would be shocking. We’d spend a penny on physical research. And another and another.....we’d make some progress wouldn’t we ?Controversially it  might just be worth our while funding a CBT  - ut-out the Bollocks Therapy for those deluded behaviourists to attend, while the rest of the world wakes up. Ah well, More Rubbish and Confusion Another day wasted.

Note from the Ed<.Are you a carer to a severe ME sufferer? Would you like to write a brief story about your experiences as a carer, good or bad? Please put pen to paper and get in touch. We have decided to feature one story per Newsletter from a carer’s perspective!

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Carer’s Information

 

An Overview of Carers' Rights


There are some specific rights that relate to carers, including employment rights, the right to an assessment and receiving direct payments.

Carers’ rights to an assessment

Under the Carers and Disabled Children Act 2000, carers aged 16 or over who provide a regular and substantial amount of care for someone aged 18 or over have the right to an assessment of their needs as a carer.

If there is more than one carer providing regular care in your household, you are both entitled to an assessment.

Very occasionally, a 16- or 17-year-old who cares for someone for a while may be entitled to an assessment. The local authority still has a responsibility to make sure a young carer's own well-being is looked after and that they receive the necessary support.

If you have parental responsibility for a disabled child, your needs as a carer will be assessed as part of a family needs assessment. You have the right to a family needs assessment under The Children Act 1989. You do not need to be the mother or father of the child.

The Carers (Equal Opportunities) Act

The act came into force in April 2005. It places a duty on local authorities to ensure that all carers know that they are entitled to an assessment of their needs, and to consider a carer's outside interests - work, study or leisure - when carrying out an assessment.

It also promotes better joint working between councils and the health service to ensure support for carers is delivered in a coherent manner.

Carers and Direct Payments

Most people who get social services support have a right to direct payments. Direct payments are cash payments made in lieu of social service provisions, to individuals who have been assessed as needing services.

Direct payments can be made to carers aged 17 or over.

There are some limited circumstances where direct payments are not given and your council will be able to tell you about these.


Carers and Employment

The Employment Act 2002 gives working parents of disabled children under 18 the right to request flexible working arrangements. Since 6 April 2007, you also have a statutory right to ask your employer for flexible working if you are caring for an adult who is a relative or lives at the same address as you.

Carers also have the right to take (unpaid) time off work for dependants in cases of emergency.

Returning to work after being a carer may have an impact on any entitlements and benefits you receive as a carer. The amount of hours you do, how much you earn and your savings will be taken into consideration.

Caring for someone while working

You may be working when you start your caring role. It's important you tell your employer about your situation.

Talking to your employer

Caring for a disabled relative is often unpredictable and care arrangements can be complex, so you will need to talk to your employer about your concerns and commitments. If you want to work, it is in your employer's best interest to consider making reasonable changes to your work pattern to help you work and continue caring.

Many employers offer help to carers in a variety of ways. Think about how your employer could best help you and talk to them about your needs. You and your employer might want to consider the following ideas.

Working arrangements

There are many different ways of working flexibly. You could work from home or have flexible starting or finishing times. Other working arrangements might be:

• compressed working hours (where you work your normal number of hours in a short time - typically fitting five days working time into four days)
• term-time or annualised working hours (the amount of hours you are contracted for per month or year are worked in a flexible way)
• job-sharing or part-time working
• flexible holidays to fit in with alternative care arrangements.

Support at work

When you discuss your caring role and responsibilities with your manager they should give you support and you may also:

• be able to talk to a welfare officer or occupational health adviser who knows about carers
• get in-house information and advice, counselling or attend support/networking groups
• receive a subscription to carers' organisations, or employee services

Special leave arrangements and time off in emergencies

Most carers know they can get emergency leave (whether paid or unpaid), but there are other leave arrangements that your employer might be able to offer. These include:

• carers' leave (paid/unpaid)
• compassionate leave
• borrowing/buying leave
• career breaks

A right to time off in emergencies


You are entitled to take a reasonable amount of time off if you have worked for your employer for at least a year and there is an emergency relating to the person you care for. This can include:

• if there is a breakdown in care arrangements
• if the person you care for falls ill or has an accident - this can be emotional or physical pain
• if your child is involved in an incident during school hours
• if you need to make longer term care arrangements
• if you need time off following the death of a dependant

Flexible working

The Employment Act (2002) gives working parents of disabled children under 18 the right to request flexible working arrangements. Also, you have the right to take (unpaid) time off for dependants in cases of emergency.

Since 6 April 2007, you also have the statutory right to ask your employer for flexible working if you are caring for an adult who is a relative or lives at the same address as you.


Other help from your employer


Other help from your employer could include:

• access to a telephone so that you can call the person you are caring for
• a reserved car parking space, to make getting in and out of work quicker and easier
• reasonable notice if overtime or working from home is necessary

Carer’s Assessment

If you need help in your caring role you can ask your local council for a carer's assessment. This takes into account your needs (for example, if you want to work and what help you might need) and the needs of the person you are caring for.

 

Member’s Experience of Care Arrangements

I am bedbound, smell sensitive, and when I am having a bad day, then noise is the last thing I want around.

I’ve set up my care with the help of my social worker so that it works for me. I use Direct Payments which means that the money that Social Services and the ILF give me goes into a separate account in my name, then I get to choose how that is spent on my care.

Using this you can choose to directly employ your own carers, but this didn’t really work for me – it was too difficult finding suitable people, and having to deal with all the rosters and payroll & things. There is an agency that deals with the payroll for you, but you still have to do all the timesheets and things. So I choose to use agencies, you still have to do some paperwork to account for how you spend the money, and write cheques to the agencies etc. but it is much less this way round.

Having talked quite extensively with various people I have gone for 24 hour live-in care with an agency called Christies Care. The way that it works is that someone arrives on a Wednesday, and generally stays with you for three weeks.

You are allowed to have an extensive care plan (which I do) and they will read it. You can specify to the agency that no perfumed products are worn, and they tell the carers before they even arrive. Because you are together with a carer for an extended length of time, you are able to settle into a routine, and if you don’t need them then they will be in earshot, but not in your space (ie. in their bedroom). I have a pair of walkie talkies that I use so we can have all the doors shut (it is quieter) and just bleep the carer when I want help. The upside of this sort of care is that you can put what you want in your care plan, and the house runs the way that you want it to with regards to perfumes, sound etc. The downside is handovers when one carer arrives and another one leaves. The day can be a little fraught!

You also don’t know a carer before she arrives, but if you like the carer you can request to have her again, and you build up a regular team. You can also request not to have someone back again.

The carers are entitled to 2 hours break every day. I can’t be left so I use a local agency to provide relief care. I have been funded by Social Services and ILF so that all of this is covered. My relief carer comes in between 1 and 5, Mon-Fri. The carers have most of this as time off, but they also do the grocery shopping during this time and any errands that I need run. I am very lucky as I have a great relief carer, I am her only client as she wanted to work just part time, and we get on like a house on fire – she has been with me for over 3 ½ yrs! Afternoons tend to be my best time, and depending on how I feel my relief carer either talks to me, helps me with jobs, plays cards or if I am not feeling well, then she sits quietly in the living room.

My live-in carer is responsible for meals and for keeping the house clean, and you can say what you want done and how in your care plan. I have a 3 x 5 card box which we use for recipes. Each meal is carefully detailed on a card with how I like it, and then the carer knows exactly what she is doing and doesn’t need to ask questions.

If you have a live-in carer, the ILF will contribute towards food costs – currently £30 a week, but they don’t help towards extra on your bills etc. What they don’t cover is a carer’s travel costs. You are responsible for the carer’s journey to you (how much you pay depends on how long they are with you (£40-£80), mostly for me it is about £60 because I live “up North” and the bulk of their other clients are in the South. For the return journey, you are responsible for up to £40 if she is not going to another client, but if she is going to another client, the new client picks up the travel.

As for carers suggesting things, or pushing you to do things you don’t want to do, rather than explaining over and over again to them, you can put it into your care plan, which they have to read and go by. I also have a file of medical info on ME & MS next to the care plan in case they want to read it.

Carer’s letter

My grand-daughter is very severely affected and completely bedbound. I would like to know how any other bedbound members get on with physiotherapists provided by the NHS?

Do they provide a hands on approach to try to get the muscles to work again?

We have been told we have to carry out massages ourselves. I think it is very cruel to expect one’s own relatives and loved ones to carry out massage on the sufferer especially when they are in so much pain that they can hardly bear to be touched.

I would be grateful to hear of any members’ experiences of NHS physiotherapist providing home visits.

Sent in by Mrs Payne. Please send any replies to the office in Troon.

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A Carer’s Perspective

In the world of the severe ME sufferer, it is not only money that makes the world go round, but care. Finding the appropriate care services and using them in the way that benefits you most, is the fundamental basis for daily living. We all need care, with or without extraordinary disadvantages or handicaps. We need help from family, friends, partners, from public services, from the world of private commerce and industry. If you think about how much private help we are told we need for ordinary living, and observe how much is available, the range is fantastical – childcare; mental health counselling; substance and alcohol support; lawn and gardening; catering; cleaning; pet grooming; pet psychology; colonic irrigation and a ton of extras - it’s a wonder we can survive without care at any level. Care is big business in the 21st century and has replaced what would have been family and community responsibilities. How has this impacted on those with additional needs of care?

In the professional sector (that is, care services outwith that of the immediate family care) there is a whole gamut of care services available, and the types of Care that you use will depend on what is the best type for you, as well as what is available to you in your area – inhouse; homecare; private agency; residential; respite; daycare; direct payments/social service community care.

“A good carer can make your life, and a bad one can make it hell”.

Fundamentally, it is important for anyone reliant on care to source the right type/amount and provider of care. Recent moves to widely make available Direct Payments has complicated further the various ways in which caring has now become ‘facilitating’, ‘empowering’ and in general, contributing to a person’s independent living. Issues of personality; intelligence; interests; knowledge; awareness; motivation; perception; empathy; understanding; dependability; stability; usefulness – these human qualities are now prerequisite demands of caregiver in the shape of a ‘Personal Assistant’.

In this sense, the issue of care has undergone a historical transformation, moving from basic provisions of making sure a person has food, clothing and a roof over their head: we now expect all of our human rights to be catered for and the modern social service model is one that reflects the rights of one who is ‘looked after’. In this aspect, care services have become removed from the notion of charity givers – and the Community Care Act has done much to influence this transformation.

So, where does that leave the rights of the one who is doing the ‘caring?’ And how often is the view of the carer taken on board? Does everyone who receives care always appreciate what it’s like to do this mammoth task, for without them where would you be? It’s not enough to treat your carer like a serf and wear them out only to direct them to the nearest support group when they collapse. In the case of the cared-for ME sufferer, (who are naturally more morally conscious than most!) responsibility and accountability are things to be shared between those involved in this reciprocal relationship between carer and client.


‘Paid For’ Care or Family Devotion?

There are glaring distinctions in the example of ME sufferer and their carer – the ME sufferer, now referred to as you, may have difficulty in carrying out the most basic tasks, whereas the carer will be expected to be fit and healthy; you will find it impossible to live a normal life, with all the occupational, social and leisure opportunities this entails – the carer will usually come from a fairly normalised background, and his/her experiences will be in almost total contrast to yours.

Professionally employed carers are similar to family caregivers in as much as they share the same rigours and experiences: there are the same demands to be met and the same issues to be dealt with. For the family carer, the emotional pressure can be much more highly pronounced, and also the responsibilities, which can be overwhelming. The family caregiver arguably has many more ties with the cared-for person and is unable to simply ‘walk away’ from their duties. This means that they will be subject to much more strain, both physically and emotionally, than the paid employee who arrives, does their job and goes away.

A family carer then has to be thought of in a different way. In the case of someone caring long-term for a family member, it will be easy for the cared-for person to fall into a trap of complacency, whereby the carer is reduced to a cross between a well-loved sister and an unpaid skivvy, who has a life only at the mercy of the disabled person’s needs.

The relationship between carer and cared-for is mutually shared and much can be done to alleviate the ‘hazards of the job’ if each is aware of their situations. Just as it is vital for the carer to appreciate what the disabled person needs, so too are the carer’s needs of paramount concern – one cannot be cared for properly if their carer is not up to the job. Even with the best laid schemes of mice and men, people in a caring situation (on both sides) can become unstuck and this is so especially where it involves caring within the family. A struggling carer under pressure will soon fall foul of mental and physical duress resulting in, for example, increased susceptibility to infections, and prolonged stress, anxiety and/or depression. It is crucial that people involved in the care environment, whether giving or receiving, recognize and address these possibilities.

As we have observed, the family caregiver is prone to a different set of pressures than that of the professional carer. This is compounded by various factors causing additional stress such as financial concerns, domestic and other family responsibilities and wider considerations governed by other life duties. Many family carers also work full or part-time and have extended family commitments to undertake.

If you are a carer to anyone with a disability, you will probably have a built-in, or learned, sense of understanding as to the needs of the person you look after: this empathy is one that naturally develops as the relationship matures over time and with experience and as each person, whether carer or cared-for, learns more about the other. Even if you are a close family member who knows the disabled person inside out – when it comes to caring for them, you will find a few surprises along the way. Furthermore, things can get even more complicated when caring for someone with severe ME, because this illness brings about a whole new set of trials due to its dramatic and irrational nature.

ME care needs –how like other care procedures? How different? Does it matter? – specific modes of communication. Individuality as core feature of ME.

Why Do Carers Need Support?

Taking on a caring role can mean facing a life of poverty, isolation, frustration, ill health and depression. Many carers give up an income, future employment prospects and pension rights to become a carer. Many carers also work outside the home and are trying to juggle jobs with their caring responsibilities. The majority of carers struggle on alone and do not know that there is help available to them. Carers say that access to information; financial support and breaks in caring are vital in helping them manage the impact of caring on their lives.
25% Group Advocacy Article



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Carers save UK £87 billion per year

The value of unpaid support that carers provide has now reached £87 billion a year according to a new report (Sept 2007) by Carers UK – more than the annual total spend on the NHS, which stood at £82 billion in the year 2006-7.

The new figures, calculated by the University of Leeds for Carers UK , are 52 per cent higher than previous estimates of how much carers save the UK (2) - £57 billion in 2002 - and the average carer is saving the nation over £15,260 a year.

The new figures are also more than four times the amount spent on social care services for adults and children by local authorities each year - £19.3 billion in the year 2005-2006.

The dramatic rise in the value of carers' support is a warning to policy makers about the extent to which our economy relies on the care provided by family and friends. It shows that if only a small number were to give up caring – perhaps through ill health or lack of support - the economic impact could be disastrous. Given our demographics and ageing population, it shows the urgent need for better recognition and support for carers.

Carers Rights Day

Friday 7th December is Carers UK's Carers Rights Day 2007 to raise awareness of the needs of carers, increase take up of benefits and to make sure carers know their rights.

Chancellor announces social care reforms

In his Pre Budget Report and Comprehensive Spending Review the Chancellor Alistair Darling announced a major reform of social care, which will include an increase in social care funding to 1.4 billion by 2010.

In making the announcement, the Chancellor said the funding "will help provide new homes for older people and help people with disabilities live independently in the community, as well as offering more services for carers."

The government will also look at reforming the provision of social care for adults and older people.
No specific commitment was made in the report as to whether the Carers Grant would continue as a distinct funding stream. The government's position on this is crucial, as without the Carers Grant funding for carers would rely on the individual commitments of local authorities and PCTs, which are by no means guaranteed.

In response to these concerns, David Behan, Director General for Social Care at the Department of Health, today provided assurances that the Carers Grant will be identified as a distinct funding stream within local authorities' social care settlements for another financial year, with a review following the Carers Strategy.

Rise in earnings limit on Carer's Allowance

The earnings limit on Carer's Allowance rises to £95, increasing the amount carers can earn before losing their Carers Allowance of £48.65 a week.

The government has announced this change in policy as an interim measure, to prevent carers losing their Carers Allowance due to rises in the National Minimum wage taking them above the threshold.

Crucially this will break the cycle whereby carers were losing income due to the lack of synchronisation between rises to the earnings threshold and the minimum wage.
Without the change, carers who were working more than 16 hours per week would have automatically lost their Carers Allowance on 1 October when their wages rose above £87 a week. All carers in this position would then have had to reapply for the allowance once the earnings limit was increased in April.

As Imelda Redmond, Chief Executive of Carers UK explains, "Every time the National Minimum Wage rose, carers were often forced off benefit or forced to give up work because the rise was out of step with the rise in how much they were allowed to earn and still keep Carer's Allowance.

"We are delighted that Government has listened and come up with this sensible interim measure whilst the review of carers' benefits is being conducted as part of the National Carers Strategy."

In announcing the policy change, Peter Hain, secretary of state for work and pensions said: "Carers play a vital role in our communities, providing invaluable help and support for their loved ones. It is right that where we can offer further support we do so.

"The higher weekly limit of £95 means that more carers will be able to keep their Carer's Allowance if they earn more money. And it means that more carers will now be able to receive Carer's Allowance for the first time.

"Together with next April's normal increase in Carer's Allowance, carers should be able to receive more than £7,500 a year combined."

This measure has been introduced pending the government's review of the National Carers Strategy, which will also look at reforming Carers Allowance to more effectively meet the needs of carers today.

CARERS STORY

Anonymous

I started caring for my daughter whilst she was in hospital where I found care significantly lacking. It was easier to do it myself rather than to find someone then wait for them to come. However, there are always exceptions to the rule, two carers helped both of us immensely. They showed me everything I needed to know – how to change sheets, roll her, move her up the bed etc. I am very grateful to them. (My daughter is bedbound and tube fed.)

“Officialdom” can be difficult for the exhausted carer to deal with. However, to get what you need for the person you care for, in both senses, you need to fight officialdom. You have to ring and ring the relevant person until their heart sinks at the sound of your voice. Be prepared to argue and even shout. Don’t be put off by the lengthy silences at the other end of the phone or the rehearsed speeches which you inevitably hear and sound remarkably like a CD on repeat! Ask who their governing body is, unspoken in this question is the possibility you might be going to make an official complaint. If you don’t get the desired result ask to speak to someone in their seniority until you work your way up the NHS ladder. Hopefully, by now they will have agreed to have a meeting to discuss it. If you are unhappy with the outcome say so and challenge it. Sometimes whilst they are deliberating you can find a solution so can ring them and politely say so. It is advisable to refrain from saying I have found a solution to your problem for you. Two memorable occasions are being in a meeting and being told my daughter’s physio needs couldn’t be met at home and giving the relevant person the name and number of a physio saying I’ve spoken to her and she’ll treat my daughter. The second was having my daughter as an in-patient waiting for an MRI scan for 6 weeks, despite the registrar repeatedly requesting it. I made a polite phone call to the Chief Executive’s Office at 3.30pm, by 9.30 am the following morning, my daughter was having a scan – going to the top really does work!

Caring, I find it very rewarding. One humorous incident, or so we think now, involved my daughter’s feed pump. She was discharged from hospital 3 days before Christmas. Her tablets weren’t ready so were to be couriered to us. I had been shown how to use the pump in hospital amidst doctors discussing her discharge etc. hardly the best environment in which to learn but I thought I had remembered. I began to set the pump up – it wasn’t playing. Panicking, I thought it was broken – after several attempts and no joy, I rang the helpline. The lady began to explain, I told her I’d already done that but followed the instructions to no avail! At that point, the door bell rang. I ignored it until my daughter mouthed “courier”. I quickly explained to the lady on the phone and asked the courier to put it in the kitchen – only 2 weeks feed and a months medication. I rushed back to the pump. As the courier went to leave, I asked, “Is the medication there?” “Dunno love”, he replied. “Can’t get much worse”, I said and went back to the pump. The voice at the end of the phone said, “have you primed the giving set”, “Sorry, I don’t understand”, “You know, ran the food to the end of the tube”. No-one had said to do that. I breathed a sigh of relief. That was all I had done wrong. We still laugh about it.

Despite working sometimes 100 hour weeks for 4p an hour, which I am told is a benefit, which implies I should be grateful, I enjoy it. However, I do feel in other circumstances the media would be involved and words like ‘exploitation’ would be banded around in regards to pay. I love spending time with my daughter; chatting to her, reading to her, discussing her hopes and fears as well as washing and dressing etc. I find my role as her full time carer rewarding. As with normal situations, there are differences of opinion such as when I tell her she has done too much and she retorts, “How can writing 2 sentences be too much!” I say, “I only have to look at your face” – you can see the exhaustion – If looks could kill!! Despite this, we get on very well and enjoy the same things. She gives a lot in return and makes the long hours worthwhile with her humour and quick wit.

One last note, I noticed in a carers magazine a carer saying she thought carers wore shabby cardigans, so this seasons “must have” are shabby cardigans. I’d prefer cashmere myself, perhaps they do discounts for those on Carers Allowance!! In the meantime, I’ll carry on caring in my strappy sandals!

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From summer 07 Newsletter

Carer’s News

I have become much more politically involved recently in campaigning for ME, however it is very difficult to sustain on Carer Allowance - 40p an hour does not pay for much. I attended a meeting in my local Hospital recently and after paying the Car Park charges, I was not able to afford a cup of coffee. It also meant that my wife and I had to cut back on food that week.

Carers UK have just (May 30 2007) released an extremely worrying survey, showing what a huge financial penalty carers pay: forced to sell their homes, cut back on food, heating and clothes, give up their jobs, and sacrifice their pensions.

The fact is life as a full-time carer is a harsh reality.

The Carers UK survey shows how the current benefits system does not allow carers an acceptable standard of living and neither recognises nor values them for the contribution they make to the national economy. Too right .

Yet us carers save the UK a staggering £ 57 billion per year!

Imelda Redmond, Chief Executive of Carers UK says: “Carers are often forced out of work because the social care system does not give them the support they need to balance work and caring. They are then consigned to a life on the margins because the benefits system is so outdated. Carers feel short-changed by the system.

Demographic trends point to the need for an additional three million carers over the next 30 years. It means that some 10 million people will experience the harsh realities that come from being a carer - and the detrimental effects that can remain with them for the rest of their lives.

Carers’ benefits simply are not fit for purpose. They were designed in the 1970s when the world was a very different place. What we need is a radical overhaul of the benefits and tax system. We also need to invest heavily in social care to ensure that carers and their families can take advantage of things that others take for granted – like going out shopping, having a weekend away, going on a course or having a job.”

The survey finds that:

72% are worse off since they started caring
65% are not in paid work
54% give up work to care
53% say that financial worries are affecting their health
33% are in debt
30% are cutting back on food or heating
10% cannot afford to pay their rent or mortgage

So what is the hope things will change under Prime Minister Gordon Brown? Well in February 2007 he paid this tribute:

"Every one of the carers I have met is an inspiration and refutes a wide spread cynicism that in today's society selfishness matters more than service to others. And having listened to their stories and the challenges they face, I know we must and will do more in the years to come to help. That is why today we are announcing the most far-reaching national consultation ever on the future of carers, to encourage the fullest engagement of the very people who would benefit most.

He also announced a New Deal for carers which includes:

£25 million to be spent on providing short-term home based respite care for carers in crisis or emergency situations in every council;

£3 million towards the establishment of a national helpline for carers;

£5 million to support the development of an experts carers programme

a wide ranging review of the 1999 national carers strategy - launched by Tony Blair. Has it delivered? Well it led to It led directly to the Carers and Disabled Children Act 2000 and to the Carers (Equal Opportunities) Act 2004. However there is a long way to go, as the survey above shows - and the fact that fewer than 400,000 of England's estimated five million carers were offered an assessment or review for services in 2005-6 and that only about 20 per cent of local authorities have a local carers' strategy in place.

Greg Crowhurst

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Wimter 06 newsletter

Diary of a Carer

About a month ago, tired of being unseen all these years, I went upstairs, sat in front of  my computer and uploaded a video of myself, as a carer, to YouTube, the revolutionary internet site which hosts millions of videos from folk all around the world .

In what soon came to feel like a moment of utter madness, I committed myself there and then to keeping a two-week video diary to try and outline some of the issues around caring for someone with severe ME. I am not sure I really thought anyone would take notice. But incredibly I instantly received messages of support and encouragement from the USA, Australia, Europe and they have just kept coming.

To my amazement people began to put their names down to be notified whenever  I post a video; and as I write this, around 7000 people have viewed the videos, they have been used to train nurses in Spain and there is talk of them being used in New Zealand too.

What, I was asked myself, as I got up every morning and faced the camera to record and post my daily diary entry can I possibly talk about today? After about Day 5, I really wasn’t sure I’d be able to sustain the effort involved as well as the peculiar challenge of being so exposed; literally to the whole world. But I kept going, finished the two week carers video diary and I have found that there is so much still to say that I am posting a weekly video now, if I can.

Making The Invisible, Visible

I am really pleased that this glimpse into the life of Linda and I has gone some way to making the invisible visible – in other words here on screen is someone with severe ME and their carer. And it is horrific.

What is so good is how other sufferers have begun uploading their stories onto YouTube too and they are heart-rending. Here are the people the psychiatric lobby say have no illness, except a behavioural disorder, in all their real physical suffering. Here are the people the psychiatric lobby accuse of lying around watching daytime TV, in all their dignity and determination. Here are the hurting, throbbing bodies that the psychiatric lobby says should not even be medically investigated, but treated with behaviour modification, in all their real physical agony.

Sufferers, by their courage, exposing the psychiatric explanation of ME for the transparent tissue of lies that it is.

I do believe that at the end of the day truth will win; the psychiatrists have got away with so much simply because people with ME are so hidden and so ill.

In Summary

There is no finer summary I suggest, of the case against the psychiatrists than Margaret Williams recent exposé on behalf of the 25% Group, which brilliantly shows how the psychiatric studies underpinning the new NICE guidelines  are guilty of :

unrepresentative selectivity of cohorts;
outright bias;
manipulation of cited references, for example, leaving out findings from cited studies that were inconsistent with their own conclusions;
excessive self-references;
distorted interpretation of results, such as presenting assumptions and taking for granted what still needs to be explained;
generating conclusions before generating the data to support such conclusions;
using mixed populations but failing to disaggregate the findings;
mischaracterisation of the facts;
using different timing measures, for example, drawing conclusions across  different studies, e.g. equating simple fatigue of 30 days with chronic severe fatigue lasting decades;
use of different diagnostic instruments: use of different definitions of improvement;
failure to assess the adequacy of the analyses performed;
failure to address the very high drop-out rates;
misrepresentation of study results, for example, in one cited study, an overwhelming majority of participants who had been categorised by the authors as ‘recovered’ rated themselves as only slightly improved and less than halfway back to pre-morbid health levels;
studying ‘fatigue’ but then claiming their results relate to ME/CFS – when the literature plainly states that that such results cannot be so.

Surely the writing is on the wall??

On a personal note – it is interesting looking back at the video diaries. From the perspective of being a carer the first few videos are far more representative I think, than the videos that follow, which concentrate, perhaps more safely, on campaigning for ME.  How difficult this situation is and how very stressful it gets – with no relief, no respite from the illness ever.

Actually doing the videos has done me much good – I am able to use many of my skills, I strongly recommend carers find some  sort of outlet for themselves, if at all possible.

By Greg Crowhurst

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From Summer 06 Newsletter

Carers to Qualify for Full State Pension

The government has announced a new “carers credit” to help carers retire on a full State Pension. However it will apply only to carers in receipt of Carers Allowance, excluding those other informal carers who do not receive Carers Allowance either because they work and so exceed the income level, or are excluded under the overlapping benefit rules, for example if they are on Incapacity Benefit. Even so the number of beneficiaries of the new Carers Credit is estimated at 270 000.
Currently around 85% of men but only 30% of women retire on a full basic state pension.

Carers’ Human Rights Being Breached

Carers UK have published a new report revealing how carers are being let down because public authorities are failing to implement the Human Rights Act- with serious and potentially life-threatening consequences.

There are three key tenets:

Carers’ rights to life are not adequately considered.
Carers who delay their own medical treatment and so endanger their health, because of inadequate support to relieve them of their duties, are being failed under Article 2 of the Human Rights Act - the right to have one’s life protected by law .

Carers’ rights to privacy and family life.
Under Article 8 - the right to respect for one’s privacy and family life - the rights of an older or disabled person should be balanced against the rights of a carer. However this rarely happens in practice.  As Carers UK point out: “Social services teams regularly tell carers that they cannot have a service the family wants, before their needs have even been assessed. They are told that even if they have an assessment they will not receive any more support. These attitudes and a failure to apply current legislation deter carers from exercising their basic rights, such as keeping up family relationships and social ties.

Carers’ rights to be free from inhuman or degrading treatment.
If public authorities know of carers “who are suffering acute mental health problems or physical illness as a result of caring and do nothing to alleviate this or prevent it,” this could constitute a violation of Article 3 - the right to be free from inhuman or degrading treatment.

Eight Major Carer Charities Call for Carer Health Checks

The eight charities who make up the Carers Week 2006 partnership are calling ‘for health checks to be made available to carers within 12 months of them becoming a carer, and regularly thereafter’.
 
A health check would include:

blood pressure check
diabetes check
mental well-being check
flu jab

It should also include a discussion about the key areas in the carers' life that are affecting their health e.g. worries about finances, the physical strain of caring, etc etc. The health check should signpost the carer to support services that can help such as welfare rights, citizen's advice, carers organisations with advice services, social services.
Carers providing substantial care, over 20 hours per week, or about to provide substantial care, should be the priority, as their health is most likely to suffer.
Carers Allowance

Those of us who care full-time and by our efforts save the Sate around £60 billion per year, find Carers Allowance a bit of an insult really, at less than 40p an hour. Many carers are demanding that the Allowance should be raised to a minimum of £192.50 per week.

The Princess Royal Trust and 27 other organisations met with the DWP recently to discuss the issue but the outcome was extremely disappointing. Apparently "Reforming Carers Benefits is not a priority in the current climate. It would cost hundreds of millions to reform the Carers Allowance. The issue however is ‘currently under review by an internal DWP review group’”.

Carer's Story

Some Observations On Being A Carer
For People With ME
Sent in anonymously

The carers' person at our Social Services wrote that "this is an exciting time for carers". I find it hard to imagine anything less exciting than being a carer except, perhaps, being in prison. I would like to be positive about the role but it does not suit me well enough for that.

My situation is unusual because both my wife, J (in her 60's) and daughter A (in her 40's) are seriously affected, and my daughter E (in her 30's) was seriously affected and, though now living independently, still needs some help.

'A' never comes downstairs, although we have a stair lift, and needs some spoon-feeding at every meal. 'J' can leave the house rarely and only with me and cannot socialise. Although she can watch TV, reading and writing both fatigue her after only a few minutes. My worst problem is the conflict between the needs of 'A' and 'J'. I have to devote a lot of time to 'A' and as a result, 'J' is neglected. Then, they both do relaxations at set times, and during these I have to be quiet. But they are not co-ordinated and at some points one stops as the other starts.
However, there are two other tensions which I guess other carers face but which I have never seen aired. One is the effect of pacing on the carer. In her effort to pace, 'A' uses an electronic timer and everything is done to the minute (or second). Consequently I have to attend to her bang on time. Meals are delivered at fixed times and I can never be more than one minute early or two minutes late – otherwise it would cause stress to 'A'. It is worth noting that when a sick person is in hospital the nurses set the agenda. When the patient is at home, (s)he sets it.

The other arises because there is no agreed treatment for ME. The carers of children with cystic fibrosis, for example, although they have a tough time, know exactly what to do and are shown how to do it by experts. But with ME, the patient may require the carer to provide treatment which is not proven and in which the carer has no faith at all. In my case, it is supplements. Both 'A' and 'J' are mad about them and take lots: liquids, tablets, capsules, sprays and powders. I am very sceptical. I think they are, with very few exceptions, ineffective. A silly waste of money and I have to monitor stocks, place orders, check deliveries and administer doses. Indeed I spend nearly as much time spoon-feeding supplements as spoon-feeding food. Putting all this effort into something I don't believe in is tiresome!

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FROM ISSUE 20 OF THE QUARTERly NEWSLETTER

Severe ME/CFS: Identifying The Underlying Symptoms

Greg & Linda Crowhurst, Nov 1 2005

When Linda first got ill there were such a bizarre number of symptoms that it was difficult to clearly identify them.  Colour, for example, seemed to hurt her eyes. Linda eventually found it extremely helpful when her colour sensitivity was confirmed as a real physical symptom. Sometimes all she can say is: “people’s energy hurts me” or “noise hurts my body”.  We have made this chart to try and identify the likely physical causes that underlie statements like this,  statements that might seem odd to an outsider or even to yourself

We hope this chart might help to validate the person’s experience and also help the carer appreciate that there really is an identifiable, underlying issue.  The chart could also come in useful on  those occasions  when one is  trying to articulate more clearly the severe sufferer’s physical reality in medical terms,for example in applying for benefits or dealing with professionals.

A lot of people with severe ME will have had an experience of being told ME/CFS is allin their mind, particularly if they have been ill for quite a few years. This chart is part of our attempt to firmly show that it is not.

Severe ME/CFS: Identifying The Underlying Symptoms - TABLE 

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CARERS INFORMATION FROM ISSUE 18

The Carers Equal Opportunities) Act  Receives Royal Assent


Health Minister Stephen Ladyman, said: "Support for carers must revolve around ensuring they are able to make choices as individuals.”


"The Carers (Equal Opportunities) Act will provide a firm foundation for better practice by councils and the health service. The Act provides councils with the appropriate levers to promote better joint working and Cupertino. This will mean ess duplication of work by social services and more focus on the needs of individual carers.”


"Most importantly, we believe it will deliver real and concrete changes for carers by placing a duty on councils to inform carers of their existing rights and extend those rights to consider the carers’ wish to combine normal everyday activities like work and hobbies with caring.”

The Act began as Private Members Bill introduced by Dr Hywel Francis MP.


Main clauses contained within the Carers (Equal Opportunities) Act 2004.


Clause 1 (Duty to inform carers of right to an assessment) Introduces new provisions into the Carers (Recognition and Services) Act 1995 and the Carers and Disabled Children Act 2000. This will ensure that carers are made aware of their right to an assessment.


Clause 2 (Assessment of carers) This expands assessments under the 1995 and 2000 Acts by requiring councils to consider the carers’ wishes to work, undertake any education, training or leisure activities. Carers will have the opportunity to discuss alternative care services and highlight the importance of equality of opportunity for all aspects of life. Councils should then take into account the outcome of such holistic assessments when providing services.


Clause 3 (Co-operation between authorities) Makes provision for consideration of carers in the planning process, as well as providing a specific duty to consider assistance in relation to individual carers. It will promote joint working by requiring bodies, including councils and the NHS, to give due consideration to requests for help from a local authority in relation to planning and the provision of services that might assist individual carers to care and to continue to care.

(would members please note this Act is applicable in England and Wales only)


Work Focused Benefit Interviews


If your partner claims Income Support, Jobseeker’s Allowance, Incapacity Benefit and Severe Disablement Allowance then you may well be called for an interview under Jobcentre plus, a new service being introduced in certain parts of the UK with the intention of extending it everywhere by 2006. The work-focused interview will be repeated every 3 years though you will not be called if you or your partner is over 60 or under 18.


If you don’t attend, your partner’s benefit will be reduced by £11.13 a week (at 2004/5 benefit rates), unless you have a good reason for not attending. Good reasons can include illness, a domestic emergency or a job interview. Benefit is restored if you attend a work-focused interview later.


If caring responsibilities, or other circumstances, make it difficult to attend the interview, you can ask for it to be deferred to a later date, or ask for it to take place in your own home. If you think there is no prospect of you being able to work in the foreseeable future, you can ask for the interview to be waived indefinitely. If the Jobcentre Plus adviser refuses to waive or defer the interview you must attend or your partner’s benefit will be reduced. You cannot appeal against a refusal to defer or waive the interview, but either you or your partner can appeal against any decision to reduce benefit because you did not have a good reason for failing to attend the interview.
You must go through the interview process, but you don’t have to follow the advice given. You must respond to questions and provide details of your employment and educational experience. However, you do not have to apply for any job they tell you about or take any other action that they recommend.

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