Bolton/bury me support group meeting thursday 21st september- visit from our clinic team

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We were very pleased to welcome several new group members to our meeting, as well as, of course, welcoming our clinic team.
Unfortunately Dr Wright was unwell and could only manage to stay for the first half hour but the rest of the team stayed and chatted with everyone.
Janet, the Community Rehabilitation Team Co-ordinator started off by telling us what has happened with the clinic during the year that it has now been up and running. She also told us that she is going to be doing a research project, and will be studying some of the work done with ME patients in clinic, by asking willing subjects to complete a questionnaire to help her understand better what is helpful and what is not.
Janet told us then, that over the past year the clinic has had 147 referrals, of which 117 were from Bolton and only 30 were from Bury. Bury PCT are doing their best to provide training sessions and sending information to the GP practices to make sure that they are aware of the service.
Unfortunately, as Janet reminded us, at present it is not possible for the service to be given to people outside Bolton and Bury, e.g. to Wigan and Leigh because of the limited number of staff. Although there are five members of the team they all work part time because of the limited funding that was available to set up the service. Dr Wright does 2 sessions per week and Helen (physiotherapist), Christine (occupational therapist) and Maureen (counsellor) all do 18 hours a week. As well as doing clinic sessions and the management courses, they also do home visits to patients too ill to go to the clinic.
At the end of the first year they have had to submit information to Patricia Noons at the Department of Health, to check that they are working within the government guidelines. This ensures funding is being used appropriately, and also lets them know how many patients have been seen and treatment given.
Janet has done a small survey, from the forms completed by patients who have already used the service, to see if they have been satisfied with the treatment and lifestyle management courses and if they felt that the staff were approachable and helpful and easy to talk to. She was very happy to tell us that the result of the survey was very encouraging and appreciative of all the staff. The main problems that were identified were with the location of the clinics and the accessibility especially at Prestwich. However they are aware of this and are looking for alternative accommodation with easier access, as more new build health centres are becoming available in the future.
While she was talking about the survey, Janet also mentioned that Gill Walsh, specialist ME nurse and project leader for the Greater Manchester Clinical Network Co-ordinating Centre (CNCC), is planning a forum meeting of patients who have attended self management groups in order to help change the service by letting them know - What worked? What could have been better? What would you change? Gill has sent us a poster in which she says that you can help the CNCC change services by

1. Contacting Gill Walsh,

2. Attending the Forum,

3. Contacting your Patient and Public Involvement Forum (PPI), Bolton 01204 394603,

Bury 0161 214 3901.

Gill Walsh can be contacted by phone 0161 922 3690, e-mail: or at Manchester CNCC for CFS/ME, Park House, North Manchester General Hospital, Manchester M8 5RB.

Dr Wright then said that he was concerned that the clinic does not have many referrals for patients from the Asian community or indeed from any of the ethnic minority groups, which seems unusual given the high number of Asian people, especially, living in Bolton. He was concerned that for some reason they are not accessing the service, whether it is a cultural thing or a social thing or some other reason. This is one issue the team are trying to address at present. He also told us that research in the USA has shown that people of Afro/Caribbean descent are more prone to the illness but that he wasn’t aware of any research of this nature done on people of Asian communities.
Dr Wright also then stated that there is only one area where they are having problems with people not attending clinic sessions and that is at the 12 month review, several people have just not turned up for their appointment with him. He said of course if people are ill and can’t come they just need to phone to let staff know they can’t attend, but there may be people who do not want a 12 month review appointment and if that is the case they would be grateful if the staff at Lever Chambers can be informed so that the appointment can be offered to someone else. Yvonne asked if there were a significant number of people not attending; and she added that of course part of the illness involves cognitive skills and memory, and some patients either forget or need help with remembering to attend. Yvonne said that the Dietetics Dept. now telephone a couple of days before appointments are due to ensure that patients will be attending. (My comment however is that when possible we all need to be aware of the very small budget available for our service and in order to treat as many patients as possible, we need to make sure that we do not waste staff time by not attending if it is at all possible. Wasted appointments cost the same as used appointments because the staff are still there, so please do your best to help avoid this situation, which also helps to avoid waiting lists becoming longer).
A discussion then started about why some GPs do not appear to know about the ME service and Dr Wright assured us again that all GPs have had both e-mail and direct mail on several occasions but still some do not know of the service. He thought that it may be useful to target some of the practices that do not make any referrals with further information. Both Janet and Dr Wright assured us that all GPs have received information several times and when it was suggested that an article be put in the local papers we were reminded that over the past year there have been numerous articles in both the Bury Times and the Bolton Evening News. The best way for a GP to become aware of the service is by a patient asking to be referred to the clinic.
Another issue that was discussed was the lack of inpatient beds for the severely affected and I explained that both myself and several members of the group have been pushing very hard for this to be rectified. The most obvious place for inpatient services would be at the Neurological Services Dept of Hope Hospital. We have been asking for services for ME sufferers from Hope for many years, we have recently asked people to write to the Strategic Health Authority, who make decisions about priority of service throughout the Region. We also keep pressure on the Neurological Alliance to ensure that they make Hope aware of the lack of services for ME sufferers. Also, Yvonne, Pat and I attend meetings of the National Neurological Service Framework Advisory Group in Bury, in order to ensure a proper support network is put in place for everyone suffering from ME. It is estimated that about 25% of ME sufferers are so severely affected that they are bed bound or house bound and many of them never see any doctor or receive any help, so it is imperative that these people are identified and given both medical support and social services support.
Yvonne reminded the group that the National Institute for Clinical Excellence (NICE) are in the process of producing guidelines for treating patients with ME, and these should be issued in April 2007. Once these guidelines are issued it will then be easier to approach both the Strategic Health Authority and those Local Primary Care Trusts who do not currently offer service in order to ask them how they will comply with the NICE guidelines.
One member said that their doctor had not referred her to the Bolton Clinic because she had already been seen at North Manchester Clinic so Dr Wright assured her that she could still find some value coming to the local service as they do offer different things.
The therapists then went to sit at the tables with small groups of members so that individuals could ask questions and give their comments and feedback. They stayed for about another 45 minutes so that everyone had a chance to contribute or discuss whatever they wished.
Many thanks to our excellent staff for once again coming out to meet the group members and to keep us updated.


boomeringue - melancholy brought on by cake withdrawal

roccococos - excessively ornate chocolate cake

chamois dodger - biscuit with optimal tea absorption characteristics

cocophany - the hazy din created by a room full of people eating chocolate cake

moussestache - the debris left on upper lip after frantic chocolate cake consumption

pavlovature - the act of eating meringue and cream at the beginning of a meal

sconeliness - sadness caused by missing afternoon tea

doughnut-disturb - self-inflicted death by profiterole

chouxicide - self-indulgent time

e-clare - online cream cake

flamboyant - colourful and glitzy tart Thanks to Cheers! - AYME

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