PERMISSION TO REPOST
The 25% ME Group is pleased to report the appointment of their new Patron
and Medical Advisor.
We are absolutely delighted to announce that Dr Byron Hyde will be taking up
the role with immediate effect.
Dr Byron Hyde is leading physician and researcher specialising in Myalgic
Encephalomyelitis (ME) and has worked exclusively with ME patients since
1985.
He is the founder and chairman of the Nightingale Research Foundation which
is dedicated to explore, understand and treat patients disabled with ME and
is at the forefront of the struggle to draw a clear distinction between ME
and the current definitions of Chronic Fatigue Syndrome. In 1992 he
published the medical reference book still used by researchers
internationally "The Clinical and Scientific Basis of Myalgic
Encephalomyelitis and Chronic Fatigue Syndrome".
Dr Byron Hyde is an outspoken critic of the role psychiatry has played in
ME. His entreaty that "Psychiatrists should not ever be placed in charge of
diagnosis and treatment of M.E. patients" is one we fully support.
Dr Byron Hyde has been instrumental in bringing about recognition of ME as a
serious illness and we feel he fully represents the interests and aims of
the 25% ME Group. We are proud to have him as our Patron.
We also take great pleasure in announcing our new additional Medical
Advisor, Dr Nigel Speight, who, as you will read below, recently departed
from AYME. We are extremely pleased to have Dr Speight on board as he is a
highly respected medical professional within the ME field and a great
advocate for the biomedical view of ME.
Below we have posted resignation letter from Dr Nigel Speight to AYME (Young
Childrens' ME Charity) for your information.
"Dear all
I just thought I should inform you officially that after a long and happy
association with AYME I have decided to resign as their Patron. Without
going into too much detail I would say that over the last couple of years I
have become aware that they have changed their position on several areas and
that our views have accordingly
diverged.
In particular AYME seem to have become more willing to collaborate with the
medical and psychiatric establishment in order to appear respectable. This
appears to have been the cause of AYME's relative enthusiasm for the NICE
Guidelines, which most of us feel involve an overemphasis on CBT and GET.
This compromise seems to have helped the
psychiatrists to get a new lease of life.
The result of all this is that AYME appear to have alienated themselves
from most of the other ME charities (with the exception of AfME who appear
to be taking a similar position). In this controversy I feel more in
sympathy with the rest of you.
I have gained the impression that AYME no longer appreciate my opinions and
prefer my status as their figurehead to be a largely
silent one.
It is a combination of all these factors that has caused me to resign and I
am sure you will all understand.
With Best Wishes
Nigel Speight"
We are especially delighted to announce the new Patron and Medical Advisor
for our Group because as many of you will know, both stand for the true
recognition and research of ME (as opposed to including it along with other
Chronic Fatigue conditions). They also are firmly opposed to any
psychological intervention within the area of ME.
We hope you will be delighted along with us regarding this news and please
feel free to report or republish this information within your own
publications etc.
With best wishes
Simon Lawrence
Chairperson
25% ME GROUP
21 Church Street
Troon
Ayrshire
KA10 6SQ
enquiry@25megroup. org
www.25megroup. org
Tuesday, 10 November 2009
Belfast Working Group: “Basket Weaving & Soft Toys”.
> Please post widely.
>
> Subject: Belfast Working Group: “Basket Weaving & Soft Toys”.
>
> Belfast Working Group: “Basket Weaving & Soft Toys”.
>
> 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.
>
> 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.
>
> 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.
>
> 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.
>
> 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.
>
> 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.”
>
> “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).
>
> 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.”
>
> 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.
>
> 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).
>
> 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.”
>
> 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?”
>
> 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.
>
> 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.
>
> H.
>
>
> Subject: Belfast Working Group: “Basket Weaving & Soft Toys”.
>
> Belfast Working Group: “Basket Weaving & Soft Toys”.
>
> 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.
>
> 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.
>
> 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.
>
> 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.
>
> 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.
>
> 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.”
>
> “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).
>
> 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.”
>
> 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.
>
> 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).
>
> 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.”
>
> 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?”
>
> 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.
>
> 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.
>
> H.
>
Sunday, 1 November 2009
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
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
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