BRAME would like to put this statement out. We were approached by the Department of Work and Pensions (DWP) this year to be part of the consultation on the new Disability Living Allowance (DLA) Medical Guidelines for the new Customer Case Management system (CCM), which is being tested this year.
At the meeting in June only BRAME and Dr Charles Shepherd (MEA) were present it is true that we were not given the document until the end of the meeting and we ourselves were totally horrified when we read it but as this was a draft document we have not until now made any comments about this, primarily because we had all promised that the document would remain confidential, and also felt that we owed the DWP a chance to make adjustments to the document, without panicking the ME community until absolutely necessary knowing what a difficult area benefits are for people living with this illness.
As a result of our belief that a new document needed to be written, we prepared a written response and also a list of respected doctors in the field of ME, and ME support groups from around the country which we felt needed to be involved in the rewriting of this document the groups we put forward were BRAME, MEA, AFME, 25% ME Group and AYME and the doctors we put forward were Dr Terry Mitchell (Medical Advisor to BRAME), Dr Charles Shepherd (MEA), Professor Tony Pinching (AFME), Dr Nigel Speight (Paediatric ME Specialist, AYME & BRAME) and Dr Basant Puri (Researcher).
We then arranged a meeting in July with the Chief Executive of the Disability and Carers Service of the DWP the department in charge of this project. BRAME has built up an extremely good relationship with the DWP through our continuous work with them. At this meeting we put forward our views on the document, our concerns, and the list of people we felt should be involved in the process, as well as strongly putting forward the need for a complete rewrite. The Chief Exec listened intently to our comments and concerns and told us to leave the problem with him and he would get back to us this meeting was also attended by the new Chair of the APPG on ME, Des Turner MP, whom we had informed of the meeting the previous day when we had had a meeting with him.
Within days of our meeting we were asked if we could provide contact details for everyone on our list of proposed people, as they were fully accepting of it, so that they could contact them to arrange a new meeting within the next month which we duly did. The meeting was arranged for early August. Due to the short time in between arranging the meeting and the meeting taking place this meant that many people we felt vital to be included could not make the meeting. My Mum then spent three whole days on the phone trying to the resolve the problem, in the end she asked the DWP whether the meeting could be postponed until October when most people would be available within the hour, they informed us that they agreed with our proposal and the meeting would be rearranged at a time more convenient for everyone.
This new meeting is coming up next week, Monday 17th October, and we have seen a new draft of the document (following comments sent in by ourselves and Charles Shepherd) which is still not satisfactory but this is only the start of the process not the end, we have not even had the meeting, so please do not panic just yet.
We have made this statement as, due to people breaking confidentiality and revealing details of this document and meeting, there is now a lot of fear occurring in the ME community, and we thought that you would like to know how hard we have worked for you on this issue, and that the DWP is trying to rectify things, and are listening to us it is at times like this, that it shows why all the work we have done with the DWP, and the close working relationship we have personally built up with the service management of the DWP, over the past 8 years has been so essential. Please be assured that we will continue our work, and will not agree with anything we feel detrimental to those affected by this condition.