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An appraisal of our meetings with the DWP for 2004 can be found within our Update 2005.

In response to a private meeting with the new Chief Executive of the Disability and Carers Service, BRAME was asked to do a full report on the problem areas for ME. We collated our 5,000+ word report and sent it off, with supportive evidence, along with a separate report we did on the need for an urgent review of the DWP Disability Handbook on CFS.

Copy of the question put to Maria Eagle MP, Minister, at the DWP Disability Forum, on 21 October 2004

by Christine Harrison (Secretary BRAME)

A recently published report (for the Joseph Rowntree Foundation) has shown that disabled people, and we would also like to add their carers, are living below the poverty line, because the benefits they receive are not enough to account for their living costs and related needs.

It states that disabled people with the greatest needs have a minimum shortfall of £200 per week.

I have numerous points I would like to make here, but perhaps I could do that separately with the Minister.

However if the Government would at least introduce the same winter heating allowance, as they have for pensioners, would help.

Regarding carers, as you know, we have been campaigning for the past 3 to 4 years for a second, higher level of Carers Allowance, to be introduced for those caring more than 120 hours a week. This higher rate to be the £44.35 Carers Allowance, plus the £79 they could earn, if not giving full 24 hour care.

Although this would still only equate to 73 pence per hour, instead of the 26 pence per hour they currently receive, this would at least alleviate the financial strain and debt they incur, in giving up their lives and careers, to care for a loved one – whilst saving this Government £34 billion per year, as a survey in 2001 showed.

I would like to ask the Minister – ‘What does the Government intend to do to alleviate the financial burden and crisis for disabled people, and their carers – some of the most vulnerable members of society?’

Perhaps the Minister would also say if she would be willing to work a 168 hour week, 52 weeks a year, for 26 pence per hour, and for it not to have an impact on the financial burden of the household?


This question received a tremendous, and spontaneous, round of applause from everyone attending the meeting, but the Minister was certainly not amused!

She was to have a meeting later that day relating to the report I mentioned. Our thanks to Tony Wright MP for supporting us in writing to the Minister about these issues and for obtaining answers to questions only MPs are able to ask. Maria Eagle’s answers now follow, our comments are in italics.

  • She was not prepared to discuss Carers Allowance – saying that it is not a wage and carers should be grateful that they are in fact acknowledged - that does not pay our bills or help with repairs – and we save the Government billions of pounds in caring for our loved ones – plus there are insufficient care/nursing home places – or some may even have to be kept in hospital long-term, tying up beds. Only 244,440 carers in the UK care for more than 5 years – this is not a lot of money for the government to find but would make such a difference to these long term carers.

  • As for the additional winter heating allowance she was quite indignant and said that there was no such thing as fuel poverty with the disabled – but then said most disabled people are over the age of 60 and receive it anyway. Only 154,300 adults between 16-60 are in receipt of high care and high mobility components of DLA and are also in receipt of Income Support – these are the people who most desperately need the fuel allowance, and again this would not cost the government a great deal to bring in, but would allow disabled people not to suffer from fuel poverty.

Annual Forum of the DWP in London on Wednesday 16 July 2003

This is an appraisal of our attendance of the DWP Forum, during which we attended two workshops – one on Direct Payments and the other on the new ‘Evidence Based Medical’ System. As always we were very active and vocal in the meetings and workshops with the DWP, and spoke to Alexis Cleveland, former head of the DWP, now head of the Pension service, and other relevant people about our concerns, especially about direct payments, and the problems that not only ME sufferers, but many blind, severely disabled and chronically ill people will face.

We also spoke at length about ME with Mansel Aylward CB, Chief Medical Advisor to the DWP. He read our BRAME literature and said he agreed with everything we state in our leaflets, and wished to keep in touch. In our following communications, along with other issues we raised, we informed him how to obtain a copy of the new Canadian Paper on ME/CFS, and also advised him to obtain a copy of what is widely referred to as the ‘ME Bible’; The Clinical and Scientific Basis of ME/CFS by Dr Byron Hyde. We have continued to be in touch with Dr Mansel Aylward CB, and he informed us that he had requested that the documents we advised be acquired for their library. We have met and been in touch for some years now with Dr Carol Hudson CMO for Schlumberger Sema for the visiting DWP doctors.

Direct Payments Workshop

These are points which we raised with some conviction at the meeting:-

  • To maintain the current order book system until they can address the concerns, which we and other organisations have been highlighting for almost 2 years now, and are still not being addressed

  • For there to be a real choice given to people to open a post office account, even if they have a bank account, if that is what they wish to do, and also for ease of access, as there are still some problems with some banks and building societies through the local post office. We highlighted at the meeting that this choice was not always being offered on the help-lines and we have heard over recent days that this has improved – the Directors of DWP and heads of departments usually do act quickly on feedback at these meetings.

  • Of course this also highlights the need for MPs to fight for and highlight the importance of the local Post Office, especially in rural communities, where the nearest bank/building society can be 10 miles away, which causes enormous problems for the elderly, infirm and disabled, and there is often very poor, if any, public transport.

  • There are difficulties for many with severe problems using the key pad for their PIN number, if they are well enough, or able, to access their local post office. If in a wheelchair they cannot put their PIN number in without being seen; the blind find it enormously difficult, the numbers are also not large enough for many with limited sight; those with dyspraxia, Alzheimer’s, cognitive difficulties, learning difficulties, mental health problems – many would have problems remembering their PIN number or feeding it in correctly.

  • When DWP quotes that many elderly people have bank accounts, they do not seem to realise that many of these do not actively use these accounts for day-to-day living. They may only use a handful of cheques in a year, and even then ask a relative or neighbour to write the cheque out for them.

  • Security – whilst currently the severely ill and disabled have to rely on carers to cash their order books for them – this is a set amount of money. There is immense anxiety over giving a personal PIN number to access a bank/building society/post office account, which would have maybe all their savings in it. This is of particular concern where someone has multiple carers, sent into their home, some of which they may only see occasionally, and yet they will have access to their PIN number.

  • We were told that they are still aware of the concerns over payments to these customers and that they are still meeting with a small representative group of organisations. As we continue to raise these issues time and again at these meetings Tanya suggested to the DWP person responsible for this group that whilst they have this smaller key group, they may find it useful to have a broader reference group with which they could meet once or twice to get this broader feedback from the users and those who work closely in the community with these groups and know the practical problems they face. This idea is being taken back and will put to this key group at their next meeting.

‘Evidence Based Medicine’ Workshop

The other workshop we attended was ‘Evidence Based Medicine’. This is being introduced in some areas of the country after initial trials for those claiming Incapacity Benefit (IB). It is a computer based programme where the doctor will work through a computer programme instead of the normal forms used currently. It may be when it is introduced in this area you may get letters from anxious patients about it. We did ask various questions about it, which caused us some concern.

  • Firstly research – a team of 8 doctors looked at the research evidence for certain groups of illnesses – 12 musculo-skeletal conditions – 6 heart and 6 lung conditions – 6 mental health

  • These doctors looked at whether there was consistent/good evidence in research, the evidence of cause, how diagnose it, treatment, long-term prognosis and how it affects function We of course raised our concerns at this point as we highlighted that most research papers that seem to be published on ME are by psychiatrists and there is a wealth of good research out there from eminent scientists but they have difficulty getting it published. This was brushed over we felt, with them saying that they try to look at a broad range of research. We will have to wait and see

This evidence base medicine is used to:

  • Write protocols that describe most common conditions

  • Create computer based training material for doctors

  • Devise simple, standardised examination techniques

  • Guide on how conditions cause loss of function

  • Define rules linking clinical findings to functional ability

This method is to be used in certain parts of the country, IB applicants will have to attend a centre at present where this method is used. They hope to eventually have lap top systems that doctors can take into people’s homes. When questioned they said that this method, if successful, could then be used for Disability Living Allowance and Attendance Allowance.

This is what we achieved at the DWP meeting, apart from our continued friendly contact with those at the highest level at the DWP, with whom we are able to speak quite frankly and openly about our concerns that face ME sufferers, and other clients with chronic and disabling illnesses. They do listen and take on board comments raised most of the time.

We will be attending meetings with the DWP again in 2004 to raise the necessary issues relating to ME sufferers and the DWP

Tanya and Christine Harrison

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