Belfast Working Group: “Basket Weaving & Soft Toys”.

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> Subject: Belfast Working Group: “Basket Weaving & Soft Toys”.
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> Belfast Working Group: “Basket Weaving & Soft Toys”.
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> After decades of near-paralysis in the care of ME patients in Ulster, the DHSSPS has moved with lightning speed to set up a new Northern Ireland Working Group for ME. This left patient groups scrambling to nominate representatives in a short space of time. It was not easy to secure nominees, particularly from the counties. Even travelling to Belfast, never mind surviving a long meeting, is an impossible challenge for most patients. The resultant spread of patient representation is therefore not perfect, and inevitably there will be complaints. Counties Armagh and Fermanagh for example, are not represented. But patient groups did the best they could in the time available, and they have managed to field a robust team on the Working Group.
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> NIMEA have secured representation from counties Derry, Tyrone, Antrim and Down. So that no single county representative is overloaded, attendance at meetings will be rotated. Jo Calder from NIMEA is purring with satisfaction that the Working Group is up and running at last. After years of patient lobbying at Stormont, she has finally got the politicians to listen. In concert with all other patient representatives present, she delivered an uncompromising message to the Working Group - No GET. No CBT. No psychiatric management.
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> Derek Peters from the NI Campaign for ME/CFS Healthcare has close links with MERUK, the research group run by Neil Abbot and Vance Spence in Dundee. Derek gave a substantial presentation to the Working Group, emphasising that ME patients wanted effective treatments to address what is a physical disease, and that adequate investment in research would be the only way to find a cure. Derek was accompanied by Joan Robinson, who read some compelling patient histories. The NHS was not making adequate provision, she said, and one result was that too many ME patients were being fleeced by charlatans in the “complementary” sector. Antoinette Christie and her sister Jeanette Marley (familyfights4me) are very experienced advocates, and well qualified to speak on behalf of the severely affected, children, adolescents, and their families.
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> The final part of the Working Group meeting on 28th October focussed on the future of the CFS Clinic at Belfast City Hospital. NIMEA received mixed reports about this clinic before it was effectively closed in July 2009. There had been consistent complaints. But there were no gripes about the Senior Occupational Therapist who did most of the clinic’s work. On the contrary, she was well-liked by her ME patients. On 12th October the Minister told the Assembly that the Belfast Clinic had only accepted 16 patients during 2009. He said that Jayne Perkes the Senior OT was continuing to treat the existing intake. He conceded that the figure of 16 clients was not a fair reflection of demand as identified by patient groups.
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> There is a range of possible explanations for this low number. It represented the intake for 6 months or less; only Belfast patients were eligible for referral; not all referrals were accepted or judged suitable for management; and many patients refused to be referred to a service headed by a psychiatrist, located in a psychiatric unit.
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> At the Working Group Horace Reid insisted that the future of the Senior Occupational Therapist in post be determined there and then. “When this Group goes looking for staff to man the new ME clinics, you will discover that there aren’t any. If you delay for six months, you will find that Jayne Perkes the Senior OT will have been diverted into another specialty, and all the skills she has built up over the years will have gone to waste. If you allow that situation to develop, you will be starting from zero level with the new clinics. Jayne is the obvious foundation stone upon which a new service will be built.”
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> “While Dr. Scott was the gatekeeper for the Belfast CFS clinic, it was the Senior OT who was responsible for most of the patient management. She is still in post, she is still funded, and there are plenty of patients who need to see her. No new patients have been referred since July ’09, and a backlog is building up. Surely some mechanism can be devised for her to receive GP referrals. After all according to NICE, GPs are supposed to be capable of diagnosing ME”. (Antoinette interjected here, expressing well-founded doubts that they could).
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> Line managers from the Belfast Trust were present at the Working Group meeting. They readily gave assurances that the Senior OT would remain in post, and her skills would be preserved. Reintroducing referrals from GPs would need to be done carefully – when patients from all over Ulster became eligible, there would be a danger that Jayne would be overwhelmed. “I’d be quite pleased if she were overwhelmed”, said Horace. “That might prompt you to employ more staff.”
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> There was then a short debate on the merits of occupational therapy versus physiotherapy. Derek Peters is no fan of OTs: “Basket weaving and soft toys”, he snorted dismissively. Joan Calder was adamant that any new ME clinic should not be headed by a physiotherapist; inevitably that would provide a route to introduce Graded Exercise Therapy by the back door.
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> An OT Manager was present, and defended her specialty: “Actually we undertake quite challenging projects, such as Condition Management Programmes for the DWP” said she, brightly. (Most ME patients are now being refused the higher rate of ESA by the DWP. Not sure it is helpful for OTs to associate themselves with this draconian new regime).
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> Antoinette said she had negative experiences with OTs in the Community. Horace confirmed that a number of mothers had made similar complaints to NIMEA. (One Senior OT had refused to recommend a stair lift for one severely affected teen. The girl was then reduced to crawling upstairs on hands and knees).
> Horace referred to official guidance such as paragraph 1.4.4.1 in the NICE CFS/ME guidelines, (p.42). “For people with moderate or severe CFS/ME, providing or recommending equipment and adaptations (such as a wheelchair, blue badge or stairlift) should be considered as part of an overall management plan, taking into account the risks and benefits for the individual patient. This may help them to maintain their independence and improve their quality of life.”
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> Horace asked: “There are regular complaints that OTs in the Community are not providing these aids. Could it be that individual OTs regard ME patients as malingerers? Could it be that personal prejudice is blinding them to official guidance?”
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> The Chairman David Galloway asked whether NIMEA’s endorsement of Jayne Perkes implied an endorsement of Occupational Therapy? Horace said it was an endorsement of an individual who was trusted by her patients; it didn’t imply approval of any particular NHS specialty.
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> Mr. Galloway repeated that he envisaged Jayne playing a lead role in the proposed new service; for instance she would certainly be involved in the training of new members of NHS staff. There are an estimated 6700 ME patients in Northern Ireland, and much of the responsibility for them will now devolve on one single part-time NHS employee. Jayne Perkes has been carrying that kind of load for some years, and luckily has survived so far. Let us hope she can continue to.
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