All Party Parliamentary Group (APPG) on Disability
Summary of a meeting at the House of Lords on Wednesday 21st February 2018
By Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
Along with the Countess of Mar, I attended a meeting of the APPG on Disability as representatives of the Forward ME group of charities.
The main agenda item was a discussion on Social Security. There were two very thorough and passionate presentations from Northern Ireland MPs representing both sides of the political spectrum – Jim Shannon (DUP Strangford) and Mickey Brady (Sinn Fein, Newry and Armagh).
Both MPs were clearly very supportive of people who were not being treated fairly by the current benefits assessment system and Jim Shannon has one member of his staff who spends their entire time dealing with benefit issues.
The presentations and discussion concentrated on problems being faced by people when claiming DWP benefits (ESA and PIP in particular) and what is happening to people who are currently claiming DLA and are now being re-assessed for eligibility for PIP.
There was strong criticism from both MPs about Capita, the company that carries out medical assessments for the DWP.
I know that both MPs also take a keen interest in ME/CFS having met them over in Northern Ireland. Jim Shannon also took part in the PACE trial debate at Westminster on Tuesday this week.
Forward ME will be having a meeting with Dr Ian Gargan, Chief Medical Officer for Capita, at the House of Lords on Wednesday February 28th.
Dr Lisa Cameron, Chair of the APPG on Disability, provided some background information on the parliamentary debate on the role of disabled people in economic growth that will be taking place in the House of Commons today (22nd February).
On the subject of employment opportunities for people with disabilities, there appeared to be general agreement that there needs to be proper legal, financial and practical support for those who are able to remain in, or return to employment in a flexible, part-time or even full-time capacity. At the same time, there must be adequate financial and other support for those who are not able to do so.
We were also given details of forthcoming meetings of the group. This will include:
- a meeting on March 7th with the Secretary of State for Overseas Development about an International Disability Summit that will take place later in the year, and
- a meeting on March 14th to discuss four major reports on disability relating to the built environment, digital technology, transport and one from the Human Rights Commission on accessible and adaptable housing.
The group also hope to have a meeting covering the way in which the media covers disability.
- APPG on Disability. Secretariat is provided by Disability Rights.
- APPG on Disability Work Programme for 2017-18.
- APPG on Disability Meeting Minutes.
- House of Commons debate on disabled people and economic growth.
- Minutes for the first Forward ME group meeting with Dr Ian Gargan.
- CS notes on the first Forward ME group meeting with Dr Ian Gargan from Capita:
Brief notes on the FMG (Forward ME Group) meeting at the House of Lords on Tuesday 25th October 2016 to discuss problems relating to PIP (personal independence payment) with two representatives from Capita:
- Dr Ian Gargan, Chief Medical Officer for Capita (UK and NI)
- Ms Rebecca Papanicolas, Communications and Stakeholder Manager at Capita
A more detailed report on the meeting will appear in the Forward ME Group (FMG) Minutes for the meeting [see above].
Dr Gargan introduced himself by stating that he was new to the CMO post at Capita – he had only started work there in August 2016 – and is consequently on a “steep learning curve” at the moment.
He has a rather unusual medical CV in that he started medical work as a psychologist, then went into forensic psychology, then became a medical doctor and went into orthopaedic surgery before entering disability medicine at Capita.
He has a keen interest in MUS (medically unexplained syndromes) and regards ME/CFS as an MUS – rather like irritable bowel and fibromyalgia.
When asked about his position on the WHO (neurological) classification of ME/CFS, he did not appear to be in favour of classifying ME/CFS as a neurological disease.
After introductions, we covered quite a lot of ground. The discussion was largely based on real life problems that people are having with PIP assessments – so thank you once again to everyone who sent me details prior to the meeting.
We were not able to deal with every case or issue but we did cover a number of common complaints.
Overall, Dr Gargan agreed that most of the examples of bad practice that were being raised should not be happening and went on to explain what should be happening instead in each case.
Capita does not employ many doctors to carry out DWP medical assessments for PIP, most of this work is now being done by nurses, OTs, physios etc.
CS note: This is a matter for considerable concern because in our experience nurses, OTs and physios are often in a position where they have received little or no education on ME/CFS or any practical patient experience. Some also have very inaccurate or unhelpful views about both the cause and management of ME/CFS.
The role of the health assessor:
Dr Gargan stressed that the job of Capita health assessors is NOT to make subjective judgements about the cause of ME/CFS, or to pass unfavourable/unhelpful comments about any aspect of ME/CFS (which would be unethical).
Equally, they are not there to dispute the need for things like a wheelchair (the subject of one specific question) or disability aids if the person says that these are required to assist with their care or mobility.
Their job is assess – based on formal and informal observations on the day along with the interview – how a person is functioning as a result of their ill health and/or disability and how this relates to the way in which eligibility for PIP is decided on the DWP point scoring system.
So the assessor should be recording what the patient is saying about their health, disability and functional capabilities and not trying to assess or dispute the accuracy of what is being reported.
The assessor should then be producing a fair, accurate and objective assessment in the report for the DWP.
Decisions on eligibility for PIP:
Capita are not there to make a decision on eligibility for PIP. The assessor's job is to produce a factually accurate report for the DWP decision maker – who then assesses all the evidence that has been obtained and makes a decision.
In reply to my question on the subject of further/supportive medical evidence (FME), Dr Gargan said that if it would be helpful to have FME from a health professional then Capita should request it and that Capita would pay the doctor for providing it. Patients should not be paying for these reports.
Relating to questions about the times of appointments, Dr Gargan confirmed that people can request to be seen at an assessment centre after 12 noon if this was going to be more helpful, especially where they are not functioning very well in the morning.
Training on ME/CFS
There were several questions on how the medical assessors receive their training and education about ME/CFS at Capita.
Dr Gargan explained that Capita is currently training materials on a range of conditions, including ME/CFS, and that he would welcome input from the FMG.
Myself and Dr Paul Worthley (formerly at Burrswood Hospital in Kent) agreed to help with this and I will now be sending copies of the MEA purple book to start this process moving.
CS Update: This offer to help improve materials relating to ME/CFS was ultimately not taken up by Capita and we will be following this up at the meeting on Wednesday, 28th February 2018.
By the end of the meeting the two representatives from Capita were left in no doubt that many people with ME/CFS are having significant and unacceptable problems with their medical assessments for PIP at Capita.
And as I pointed out, there is something seriously wrong with an assessment system where a significant number of people with ME/CFS are being told they are not eligible for PIP but then go to appeal and win their case – sometimes achieving enhanced rates for care and/or mobility components of PIP.
We will continue to monitor the situation at Capita.
If you feel that something has gone wrong with your assessment, it is very important to contact Capita, preferably in writing, to inform them about what has happened and what action is going to be taken as a result: