Here you can see the latest goings-on regarding the ME services. This will be updated whenever there's more news.
Please click to see description of service provision borough-wide
Latest News:
THE NUMBER TO CONTACT THE ME CLINIC VIA LEVER CHAMBERS HAS CHANGED TO: 01204 462 765
Referrals to the new ME Clinics-for Bolton and Bury residents, please ask for a referral to:
CFS/ME Clinic
C/O Dr Andrew Wright
Neurological Rehabilitation Team
Lever Chambers
Ashburner St
Bolton
All correspondence will be from Lever Chambers, but you will go to the appointment at Dalton House at 33 Leigh Rd if in Bolton or the Prestwich Walk-In Centre if you live in Bury.
We've been advised that people who have their own clinic, e.g Bolton and Bury, shouldn't ask for referrals to North Manchester anymore, they are very overwhelmed apparently, and why travel all that way when we have our own clinics in Bolton and Bury?
The North Manchester Clinic is primarily for people in areas that don't have a clinic, e.g Wigan and Leigh. Doctors SHOULD BE AWARE of the new clinics! The PCT has sent each GP/surgery 3 or 4 letters and emails, so they have no excuse! We're trying to get a poster published to put in the surgery for patients and docs should know the details.
We're also hoping to have an open day with all the people involved in obtaining the service provision. I'll keep you updated.
- Do you have a diagnosis of CFS/ME?
- Do you live in the GM area?
- Are you housebound because of your CFS/ME?
- Do you need management support and advice for your CFS/ME?
- An initial assessment from out CFS/ME Nurse Specialist and Clinical Psychologist.
- 5 Home visits and 5 telephone appointments (as appropriate)
How can we improve the self-management groups?
- What worked?
- What could have been better?
- What would you change?
- You help us change the service by:
- Contacting Gill Walsh
- Attending CFS/ME Forum
- Contacting your Patient and Public Involvement Forum (PPI).
- Bolton: 01204 394603
- Bury: 0161 214 3901
The team are planning a forum meeting in December to discuss these ideas-please contact Gill if you would like to attend. email gillian.walsh@nhs.net There is no set date yet.
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The Clinics are now officially up and running! One member who has had ME for 25 years says she felt like "a new woman" and "lifted" when she left! She said she had never felt so positive! So please get a referral, if we can show there's demand for the service, they will keep it going, if not, they will close the clinics and we will be back where we started. Ask for the CFS/ME Clinic, Dr Anderw Wright, c/o Neuro Rehab Team
Greater Manchester CFS/ME Network: GO TO WEBSITE
Please note that Dr Wright cannot prescribe private treatment, such as Samento or anti-biotics, as it is not an NHS approved treatment, he can only diagnose and offer symptom control.
The Bolton ME clinic will be at Hulton Hospital, Deane. The Bury ME clinic will be at Prestwich Walk-in Centre The Bolton and Bury Primary Care Trusts had their first meeting to discuss setting up the new clinic.
Dr Wright has been appointed lead physician.
He will be supported by a neuro-rehab team including physio's, occupational health, lifestyle management and others.
As many of you already know, the government has pledged £8.5 million for new services to be set up by the NHS for ME sufferers. Our group committee and several other members have done sterling work in writing to MPs and the Primary Care Trusts.
Some of you have joined us when we have been to meet Ivan Lewis and Dr Brian Iddon and both Bury and Bolton Primary Care Trusts.
Yvonne and I have also been able to become members of the Greater Manchester Network Coordinating Steering Group in the hope that we may be able to both represent views of patients and carers and to exert some influence towards getting Bolton and Bury sufferers some level of service provision.
We made sure that both PCTs (and Wigan and Leigh) were aware that this money was available and asked that they put in a bid for some of it to set up a clinic for ME sufferers.
Bolton PCT did put in a bid to fund a new service but unfortunately at the first attempt it was refused. One of the reasons for the refusal was that the Department of Health want several PCTs to join together to provide service for a greater number of people. Although Bolton had contacted several other PCTs they were reluctant to join in the bid for money because at that time, they thought the funding would be for only one year and after that the Health Authority would have to fund the service out of existing finds. However, this is not the case as the funding will be ongoing.
When Yvonne and I went to the Network Coordinating Steering Group meeting in May we were able to talk to Patricia Noons from the Department of Health, who had come from London to talk to the group. We asked if the bid could be reconsidered and what we could do to help. Patricia Noons was very sympathetic and advised us that Bolton need some partner PCTs to join the bid. She said that she would do everything she could to help if she received a letter from Bolton by the following Monday to say other PCTs were joining the bid. Yvonne and I then did a mad scramble for the rest of the week to get all the information Bolton PCT. We also contacted Bury PCT and the new Director of Strategy and Service Development to try to encourage Bury to join with the Bolton bid.
After a hectic week of emails, telephone calls and faxes flying hither and thither both Yvonne and I were exhausted but felt that we had done everything that we could possibly do to encourage the success of the bid. I am pleased to say that on the Monday in question, Bolton PCT contacted Bury PCT and the Department of Health and the bid was resubmitted with Bury supporting the bid in principle, with the possibility of Wigan and Salford joining at a later date. This was the best news we have had so far and we are now crossing our fingers that the bid will be accepted and that we can be involved with the service planning We are very grateful to the staff at Bolton PCT and the new Director of Strategy and Service Development for all the work they did to get the bid resubmitted.
The proposed service will be headed up by Dr Tariq Gabor who is a consultant physician in neuro rehabilitation.
Description of Service Proposal
The service will be available for all referred patients diagnosed by a medical practitioner as suffering from CFS/ME.
Any medical practitioner, health or social care professional, or the patients themselves may make referrals.
The MDT will accept all referrals. A multidisciplinary assessment will be undertaken.
The diagnosis and medical need will be identified by the Consultant Physician. The Consultant Physician will also oversee the clinical care provided by the MDT.
The Osteopath/Manipulative Physiotherapist will undertake a physical examination to identify subjective and objective findings, inclusive of isokinetic measurement of muscle fatigue. Treatment and rehabilitation will compromise the R.N Perrin model of service outlined in RN Perrin et al 1998 "Effectiveness of Osteopath treatment on symptoms associated with ME"
This will include-
-Soft tissue massage of upper spinal muscles and the muscles of respiration.
-Mobilisation and manipulation of the thoracic and upper lumbar spinal segments.
-Effleurage, to aid drainage in the thoracic and cervical lymphatic vessels.
-Exercises to improve the mobility of the thoracic spine and physical co-ordination.
A telephone help line will be available and will be responded to within 1 working day.
The counsellor will provide specialist assessment in relation to anxiety levels, sleep disturbance and cognitive function. A programme of therapy will be delivered, according to the need.
On Monday 4th October Yvonne and I made our way to St Peters House in Bolton to meet with the team of people who will decide the future of our new ME service and what will be provided. We were both really excited that at long last our dream of a specialist clinic is to be a reality. The team of people came from various departments within the Trusts, of course there were the very necessary administration staff including Rachel, who has worked so hard to put the bid together and obtain the money from the Department of Health with Tracy Studholme, Intermediate Services Manager. We were extremely pleased that Dr Peter Elton came from Bury P.C.T as his advice and expertise are most valuable. Of course Dr Gaber was there as the clinical champion of the bid and much of the service provided will be from his neurological rehabilitation team, and Janet Priest the manager of the team was with him. We are really delighted that Dr Wright has been asked to be the physician who will head the service and also present was Helena Leyden who is Director of Nursing Development at Bury P.C.T. The meeting lasted for two hours because of course there was a lot to discuss and to be decided.
At present only two P.C.T's have supported the bid so the service will be for Bolton and Bury and it is hoped that there will be some sessions in each area. There will be sessions in clinics at one of the Health Centres and the doctor will also make home visits to those too ill to attend. It was acknowledged that there needs to be a quiet waiting area with provision for those who can't sit waiting and may need to lie down. Also the possibility of some morning sessions and some afternoon sessions, as of course everyone is not good at the same time.
The idea is that the medical clinic will establish the diagnosis and offer medical management such as symptom control such as pain relief and also medical reports to support benefit applications. The patient will have seen their own GP who will do a series of blood tests to exclude other illnesses and the results will be available at the first visit to see Dr Wright at the clinic. As well as the medical input there will also be support from the physiotherapists and the rest of the neurological rehabilitation team who already have lots of expertise in helping patients who are very poorly with neurological disorders such as MS and Motor Neurone Disease. There will also be help from an Occupational Therapist and there will be a counsellor who can be very helpful to assist people to come to terms with this very disabling condition. Also to offer CBT to those who would like to try to see if it could help them cope better with things such as sleep management and general lifestyle management.
This is really very exciting and I feel it is wonderful that we are to have a domiciliary service for those too ill to come to clinic as it is usually these sufferers who are worst affected who get the least service. Everyone at the meeting was very keen to make sure that we are happy that the service is going to be the best possible and useful to all our members.
If you have any strong feelings or suggestions or just words of encouragement for the team, please send them to me (caroline@mesupportgroup.co.uk) as I can pass them on.