ME Association: Summary of the All Party Parliamentary Group on ME (APPG on ME) meeting on 10 March 2010
Note: This is a personal summary prepared by Dr Charles Shepherd on behalf of the ME Association and not the official Minutes which will be published later.
This is a brief personal summary of the last meeting of the current APPG on ME before the general election takes place, almost certainly on 6th May.
The meeting was a friendly and harmonious occasion, which terminated in a vote of thanks to Dr Des Turner (who is retiring from parliament) and all the parliamentarians who have been involved with the current APPG.
After the election a new APPG on ME will have to be formed – provided there are sufficient parliamentarians willing to do so.
A more detailed account of this meeting will appear in the minutes and the transcript, which normally takes a few weeks to prepare, approve and publish.
Committee Room 18 at the House of Commons.
The meeting lasted from approximately 1.30pm to 3pm.
Dr Desmond Turner MP (Chair)
Countess of Mar
Parliamentary office representatives
Sir Peter Spencer (Action for ME)
Tristana Rodriguez (Action for ME)
Dr Charles Shepherd (MEA)
Organisations and individuals
Jane Colby – Tymes Trust
Jill Cooper – Warwickshire Network for ME
Christine Harrison – BRAME
Doris Jones – 25% Group
Bill Kent – reMember
Jill Pigott – Worcestershire ME Support Group
Mary Jane Willows – AYME
Apologies to anyone whose name is missing from this list. I will include if you let me know.
There were two main items on the Agenda.
Firstly, a presentation from Vanessa Stanislas, CEO at the Disability Alliance, on issues surrounding disability poverty.
Secondly, publication of the final report which summarises the work and findings of the APPG Inquiry into NHS service provision for people with ME/CFS.
VANESSA STANISLAS: TACKLING DISABILITY POVERTY
VS started off by describing the work of the Disability Alliance. This is an organisation that brings together a wide variety of charities with whom they work collaboratively on issues relating to disability – state benefits and financial issues in particular.
A key part of their work at present is preparing for the general election and the need to highlight to all political parties the important issue of disability poverty.
To take this forward the DA has prepared a ‘Disability Manifesto’ titled Tackling Disability Poverty. Copies of this publication were circulated to all present and it is also available on the DA website at:
VS went through some of the key facts and evidence about disability poverty that are referred to in the manifesto:
• Disabled people are twice as likely to live in poverty as other citizens
• 29% of disabled children live in poverty in the UK.
• A third of disabled adults of working age live in poverty.
• 50% of disabled adults of working age are not in paid work.
• 29% of pensioners in households with one or more disabled adults who were not in receipt of disability benefits lived in poverty.
• 80% of people with mental health problems and learning difficulties are not in employment.
• Half of all carers subsidise the cost of the disabled person they support because of inadequate disability benefits.
• And with the UK now experiencing a recession there is a real risk that the economic downturn will lead to a reduction in action to tackle poverty in those who are sick or disabled.
VS also referred to a number of very practical issues that disabled people have to face, all of which can have a significant effect on their income levels:
• Perverse and complex rules that govern eligibility to DWP benefits – people do not understand the benefit system.
• The resulting low take up of benefits that people may be entitled to.
• Employer discrimination.
A number of recommendations are being put forward by the DA to help reduce disability poverty with the aim of eliminating disability poverty by 2025. These include:
• Measuring disability poverty as a unique form of poverty.
• Excluding disability benefits from ‘income assessments’, or including the extra costs of living that disabled people experience.
• Measuring disability should be deconstructed by age group.
Following her presentation there were numerous questions and points. These included:
• Fuel poverty and the need to extend the extra heating allowance to sick and disabled people under pension age.
Des Turner said that the parliamentarians were pressing hard on this in relation to the discussions on Social Tariffs in the Energy Bill that is now going through parliament.
NEA link: http://www.nea.org.uk/charity-calls-for-energy-bill-to-address-injustice-of-poor-paying-more-for-fuel
• Problems relating to the differences between the medical model of disability (ie how illness disables people) and the social model of disability (ie how the world sees and deals with disabled people regarding the provision of services etc).
• Problems with ATOS – the agency that carries out medical examinations and assessments for DWP benefits.
• The Countess of Mar pointed out that an ESA review was taking place and this required representation from the ME/CFS charities
• Tremendous differences in the knowledge and attitude that is expressed about ME/CFS when cases are brought to tribunals. Des Turner stated that this was an important part of his workload. He supported these concerns about lack of knowledge regarding both the illness and the actual regulations.
• The political debate over targeting what money there is in the benefit pot at people most in need (ie means testing more benefits). Or do the problems this could cause mean that there should still be universal benefit provision – regardless of income and capital.
• Sick and disabled children.
• Social Fund – where grants have now been replaced by loans. This means that people are very reluctant to replace key items that break down.
• Is there enough evidence of discrimination and bad practice in the way the system works to force a judicial review?
• Disability poverty as it affects carers.
APPG REPORT ON THE INQUIRY INTO NHS SERVICES
The report is now finished. Copies were circulated to all present and a link to an electronic version has been placed on the MEA website.
Open APPG on ME Press Release: March 10 APPG Inquiry Press Release
Open Final Report:
APPG on ME Final Report Inquiry into NHS Service Provision for ME/CFS March 2010
Des Turner stated that the conclusions and recommendations are exactly the same as in the preliminary report that was circulated at the last meeting in December. The text of the final report expands on the justification for them.
Copies of the report, along with an appropriate accompanying letter, will now be circulated to:
Chief Medical Officer, Sir Liam Donaldson
Primary Care Trusts (PCTs) and Strategic Health Authorities (SHAs)
Medical Royal Colleges
Other professional bodies: Royal College of Nursing etc
Des Turner agreed that a list of PCTs who did and did not reply to the questionnaire should be made available on the APPG website. ( http://www.appgme.org.uk/inquiry/inquiry.html )
Des Turner circulated a letter he had sent to Mike O’Brien MP, Minister of State, Dept of Health, on the need for biomedical research, along with the minister’s reply.
The meeting thanked Nick Osborne for all the work he had done over the past year or so in collecting and analysing the evidence and drafting the various versions of the report.
A short discussion followed. Key points included:
Jill Pigott said training of NHS staff was vital and information about a range of ME/CFS conferences and meetings should be made available to NHS staff via the British Association for ME and CFS (BACME) and on their website.
Christine Harrison referred to the continuing problems in Norfolk in trying to re-establish a consultant led service following the retirement of Dr Terry Mitchell. She pointed out that yet another Working Group had been set up. The local patent representatives had a number of concerns about the report they have received.
Peter Spencer referred to the need to try and get the Select Committee on Health involved with the issue of NHS service provision.
Charles Shepherd pointed out that local political initiatives could help here and referred to the situation in Gloucestershire where the NHS Foundation Trust had just been heavily criticised by the county council’s health overview and scrutiny committee over lack of consultation on a proposal to cut 200 hospital beds in Cheltenham and Gloucester. As a result this proposal is now on hold. BBC link:
Jane Colby referred to children’s services and the need to take note of surveys of what children and young people want – as had been carried out in Essex.
Ciaran Farrell pointed out that is was very difficult for local people and local groups to make any impact on the decision making process at a local level because they often lacked the skills, knowledge and resources to do so.
Jill Pigott asked if there any good LMDTs that could be recommended to PCTs who may be interested in setting up an ME/CFS referral service.
Several people commented on the fact that the lack of direction from central government over local decisions on health issues was not helping people with ME/CFS get the services they need. The Dept of Health had to be more proactive, especially where local providers were not providing an NHS referral service.
The APPG has also issued a press release, which can be found on the MEA website. In it, Des Turner is quoted:
“Our report sets out clearly some long standing problems which are simply not being tackled by organisations that should be doing a much better job of supporting the 250,000 people in the UK with ME/CFS. We are particularly concerned by the failure of many Primary Care Trusts to fund any services for ME/CFS patients especially children and the most severely affected. We are also deeply concerned by the by the poor knowledge that many doctors have about this illness and by the failure of the DWP and its contractor ATOS to understand its adverse impact on many patients’ ability to undertake regular work.”
Press Release: March 10 APPG Inquiry Press Release
APPG LEGACY PAPER
The final version of the APPG Legacy Paper 26.02.10 was presented and agreed. This is a document that will pass to the next APPG. The paper sets out actions and initiates that have been taken by the current APPG along with issues that remain to be addressed by the new APPG.
A few minor points were raised.
A copy of this document can be found on the MEA website. (Here on ME agenda: APPG Legacy Paper 26.02.10 )
STATEMENT FROM WEST MIDLANDS GROUP ME CONSORTIUM
With the time at just after 3pm, and ushers trying to clear the room for the next MPs meeting, there was no time for detailed discussion under AOB. Jill Piggott was allowed to present a written statement requesting that a representative from the CCRNC/BACME attends the next APPG meeting to discuss the nature of education and training for staff involved in providing NHS services. The MEA will place a copy of this statement on our website when we have one.
Summary prepared by Dr Charles Shepherd, Hon Medical Adviser MEA