Belfast Working Group: Them and Us.
“Our patients have never been given what they need and want. We have always been fobbed off with whatever it has profited the psychiatrists to force upon us.”
First Meeting of the Northern Ireland Working Group on ME, 28/10/09.
When NIMEA met the Health Minister on 28th September we were surprised and pleased by his plans. There was to be an ME Working Group, patients would be invited to sit on it, and a new clinic was contemplated, in a neurological context.
In England NICE has operated a successful strategy of divide-and-rule with the ME charities. One patient group had a very cosy relationship with the GDG, to the exclusion of others, and an even cosier relationship with the NICE legal team during the Judicial Review proceedings. The same tactics of favouritism are obviously in operation within the CCRNC also.
But thankfully there is no sign of the DHSSPS resorting to the same kind of Machiavellian strategies in Ulster. All patient groups in Belfast and the counties who wanted to be represented on the NI Working Group, found themselves knocking on an open door. All shades of opinion have been given a welcome. What should happen, has happened.
At the first meeting the patients were given their full say. As a matter of fact, during the 90 minutes allocated it was difficult for anyone else to get a word in. There were ten civil servants and senior NHS personnel present, and they were exposed to the full blast of decades of pent-up patient frustration.
The Chairman was David Galloway, DHSSPS Director of Secondary Services, and he was obviously following his Minister’s instructions to properly consult with patient Stakeholders. Mind you, such was the volume of patient input that he had to abandon half the meeting’s planned agenda.
Among the medics the Neurologists were represented, as promised. The designations of others present are still causing come puzzlement: “Assistant Director Physical & Sensory Directorate”, “Programme Planner for the elderly and physically disabled”, “Older People's Services”, for example. But there wasn’t a psychiatrist in sight – hooray!
At a late stage we discovered that the medics had held a “pre-meeting” before our arrival. Didn’t want to talk in front of the children, d’you see? That was a bit disconcerting. Considering none of them had any specialist clinical expertise in ME, what could they usefully discuss in our absence?
And at our meeting there was very little interaction between NHS personnel and we patients. A few responded only very briefly, when prodded by the Chair. They were hearing NHS horror stories from patients on every side of the room, but this produced little apparent reaction.
In any other medical specialty, I imagine that in such a meeting there would be unanimity of purpose and brisk engagement between clinicians and clients. But in the UK it has not been like that as regards ME. Our patients have never been given what they need and want. We have always been fobbed off with whatever it has profited the psychiatrists to force upon us.
In Belfast it was not possible to divine what the medics were thinking. That was a pity. This was a rare opportunity for some much-needed doctor-patient rapprochement, and it hasn’t yet materialised.
Medical care shouldn’t be like this. It shouldn’t be a case of “Them and Us.” I hope we can do better. I hope we can persuade them to see it our way.
More later.
H.
“Our patients have never been given what they need and want. We have always been fobbed off with whatever it has profited the psychiatrists to force upon us.”
First Meeting of the Northern Ireland Working Group on ME, 28/10/09.
When NIMEA met the Health Minister on 28th September we were surprised and pleased by his plans. There was to be an ME Working Group, patients would be invited to sit on it, and a new clinic was contemplated, in a neurological context.
In England NICE has operated a successful strategy of divide-and-rule with the ME charities. One patient group had a very cosy relationship with the GDG, to the exclusion of others, and an even cosier relationship with the NICE legal team during the Judicial Review proceedings. The same tactics of favouritism are obviously in operation within the CCRNC also.
But thankfully there is no sign of the DHSSPS resorting to the same kind of Machiavellian strategies in Ulster. All patient groups in Belfast and the counties who wanted to be represented on the NI Working Group, found themselves knocking on an open door. All shades of opinion have been given a welcome. What should happen, has happened.
At the first meeting the patients were given their full say. As a matter of fact, during the 90 minutes allocated it was difficult for anyone else to get a word in. There were ten civil servants and senior NHS personnel present, and they were exposed to the full blast of decades of pent-up patient frustration.
The Chairman was David Galloway, DHSSPS Director of Secondary Services, and he was obviously following his Minister’s instructions to properly consult with patient Stakeholders. Mind you, such was the volume of patient input that he had to abandon half the meeting’s planned agenda.
Among the medics the Neurologists were represented, as promised. The designations of others present are still causing come puzzlement: “Assistant Director Physical & Sensory Directorate”, “Programme Planner for the elderly and physically disabled”, “Older People's Services”, for example. But there wasn’t a psychiatrist in sight – hooray!
At a late stage we discovered that the medics had held a “pre-meeting” before our arrival. Didn’t want to talk in front of the children, d’you see? That was a bit disconcerting. Considering none of them had any specialist clinical expertise in ME, what could they usefully discuss in our absence?
And at our meeting there was very little interaction between NHS personnel and we patients. A few responded only very briefly, when prodded by the Chair. They were hearing NHS horror stories from patients on every side of the room, but this produced little apparent reaction.
In any other medical specialty, I imagine that in such a meeting there would be unanimity of purpose and brisk engagement between clinicians and clients. But in the UK it has not been like that as regards ME. Our patients have never been given what they need and want. We have always been fobbed off with whatever it has profited the psychiatrists to force upon us.
In Belfast it was not possible to divine what the medics were thinking. That was a pity. This was a rare opportunity for some much-needed doctor-patient rapprochement, and it hasn’t yet materialised.
Medical care shouldn’t be like this. It shouldn’t be a case of “Them and Us.” I hope we can do better. I hope we can persuade them to see it our way.
More later.
H.
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