Belfast Working Group: A Shoestring Affair.

Please circulate.

Belfast Working Group: A Shoestring Affair.

“The Minister and his civil servants are resorting to the art of illusion, and are desperately trying to conjure imaginary ME services out of thin air.”

First Meeting of the Northern Ireland Working Group on ME, 28th October 2009.

The Northern Ireland ME Working Group is going to be a shoestring affair. It will not be the Belfast equivalent of the English CMO’s Working Group in 2002, and it will not be comparable to ongoing efforts in Scotland to produce a Statement of Best Practice.

The Working Group Chairman (David Galloway, Director of Secondary Services DHSSPSNI) opened proceedings by announcing that the primary intention was to set up pathways to guide ME patients to existing services in Northern Ireland. This drew a tart response from Horace Reid, who said that currently there were NO specialist services for ME patients in Ulster, and than any new pathways will simply lead to blind alleys. The Chairman seemed to accept this point.

In his statement to the Northern Ireland Assembly on Monday 12 October 2009, the Health Minister tossed a number of mutually incompatible proposals into the air, and we are now waiting to see where they land. Among the phrases he used were: “We are guided by the NICE guidelines.” “We are looking at best practice in other areas.” “In common with NICE guidelines, a neurology-based service rather than a psychology-based service.” “We will take account of the neurology review, which is coming forward, and the physical and sensory disability strategy, the consultation on which will be put out shortly.” “No doubt we can tease out whether to have one ME centre in Northern Ireland or use the services that are available throughout the health and social care framework to create a system in Northern Ireland that is signposted by GPs.”

Take out of that what you may.

The NICE CFS/ME guidelines of 2007 became operative in Ulster in February 2008. The NI CMO instructed the health trusts to implement them, and invited their proposals. A deafening silence ensued, and absolutely nothing has happened since. Except that in July 2009 the Belfast Trust closed the only existing specialist ME facility that we had in Northern Ireland.

The Health Minister is embarrassed that 7000 ME patients are being largely neglected by his Department, and tells fibs in the Assembly to disguise this failure: “Mr McCarthy says that ME patients have nowhere to go. That is not true. Patients have the whole health and social care system to address their needs, and it does so.” ME patients here know this is pure fiction.

With recession, severe budget cuts are now affecting the NHS in Ulster. In September for instance, 150 acute beds in the two main Belfast teaching hospitals came under threat. It would initially cost £0.7m if the DHSSPS thought of implementing the NICE CFS/ME guidelines in Ulster, and that kind of money will be hard to find. So the Minister and his civil servants are resorting to the art of illusion, and are desperately trying to conjure imaginary ME services out of thin air.

At the Working Group’s first meeting Horace got to the point pretty quickly: “The needs of ME patients have been identified long ago by committees in Canada, Australia, England and Scotland. There is no need to re-invent the ME wheel in Belfast, with prolonged deliberations. The proceedings of this NI Working Group should be time-limited. The important thing is implementation. The only thing that will impress our patients will be results on the ground. We have a very large number of patients who are being neglected, we have no budget, and I could count on the fingers of one hand the number of NHS staff in Ulster who know anything about the management of ME. These are the unpalatable realities, and the challenges for this Working Group”.

A wide range of clinical disciplines were represented at the meeting by senior NHS personnel, and Antoinette Christie and her sister Jeanette left them in no doubt of the consequences of government failure to invest in the diagnosis and management of ME. She and Jeanette are seasoned advocates, and they are a formidable double act. Antoinette has two teens with ME, one of them very severely affected. As a mother she is carrying a load which would destroy most families, but she remains amazingly full of fight.

NIMEA knows of many other mothers in the same situation, who dread ham-fisted intervention by the NHS and Social Services, and who have leaned it is safer to keep your head down and not attract attention. But not Antoinette. She knows the NHS is failing her, and she actively carries the war to the enemy. She and Jeanette outlined at length how it had taken fully 11 years to get a diagnosis for one of her boys. This was very powerful original testimony, coming from an ME mother right in the firing line. On Wednesday last it was a vital part of the new Working Group’s proceedings. What she had to say wasn’t news to the patients present, but it probably came as a shock to the civil servants and senior medics. I hope it did them some good.

Sooner or later Antoinette was going to become a target for the Child Protection squad, and eventually that happened when she asked for home tuition.

Horace to Antoinette: “You asked for help, and instead of helping they made trouble for you.” Antoinette: “Yes.”

Horace to Chairman: “NIMEA can tell you of other instances where ME mothers have been subjected to the same kind of ‘Blame the Victim’ tactics by DHSSPS employees.”

Towards the end of the meeting only one senior doctor contributed to the discussion with the patients. Speaking very briefly, he said that the NICE guidelines were a tool to bring about improvements for ME patients in Northern Ireland.

Seizing on this, Horace quoted from page 305 of the guidelines:
Key principles of care for people with severe CFS/ME.
“Management of severe CFS/ME is difficult and complex, and healthcare professionals should recognise that specialist expertise is needed when planning and providing care. Diagnosis, investigations, management and follow-up care for people with severe CFS/ME should be supervised or supported by a specialist in CFS/ME. People with severe CFS/ME may need to use community services at times. These services may include nursing, occupational therapy, dietetics, respite care, psychology and physiotherapy. The input of different professionals should be coordinated by a named professional.”

This was the level of service Antoinette and other ME mothers should be receiving, but instead they are left abandoned and forced to cope on their own. If the NHS in Northern Ireland intends to implement in full the NICE recommendations for severely-affected patients, then it has a mountain to climb, said Horace.

The next meeting of the Working Group will be in the New Year. By that time the different Health Trusts are expected to come up with proposals to establish new services for ME patients in Ulster.

More soon.
H