Bury/Bolton ME/CFS Support Group ME/CFS Clinic News

Here you can see the latest goings-on regarding the ME/CFS services. This will be updated whenever there's more news.

REFERRALS: New patients need to be referred to the service by their G.P and have blood work send with the referral. Unfortunately, the clinic cannot accept out of area patients, only those in Bolton and Bury.

Existing patients, if they are encountering problems, may self refer back to the service by phoning the service, for up to 12 months after their discharge. After that time they may be re-referred by contacting their G.P. This applies to both Bolton and Bury patients.

If you ask your doctor to refer you to the Bury or Bolton ME/CFS Clinics, please ask for the referral to go to:

CFS/ME Clinic
Breightmet Health Centre
Breightmet Fold Lane
Breightmet
Bolton
BL2 6NT

Telephone: 01204 462 765

UPDATE NOVEMBER 2014:

ME/CFS Steering Group Meeting
Caroline and Joanne joined the team for the now annual steering group meeting at their Breightmet Health Centre base. We were introduced to Michelle, who is the new strategic therapy lead who will provide specialist input and help develop the team, and Simon, the principal service lead. We also met Tamzyn who is the new Occupational Therapist for the team.
There is also a new therapy assistant role in the team, to be piloted in a bid to provide a follow up appointment in the home. This could be for equipment, hoists, a wheelchair or a cognitive follow up. This is aimed at releasing more time for the other therapists to spend time in clinic. Currently, patients can self-refer themselves back into the clinic within 12 months of discharge. The team are going to pilot how self referrals within these 12 months are seen. This would involve a therapy assistant going to the self referrers home to complete information / outcome measures and feed back information to the team, to allow the patient to access the pathway at the most appropriate point. The trial will be for approximately 12 months. Waiting times are variable at the moment, but do vary throughout the year anyway. As staff changes have taken place, recruitment and training was needed so the waiting list went up, but was managed as best as possible.

The amount of pre-appointment paperwork patient needs to fill out was brought up, e.g. the content, time taken to fill out, how relevant it was, etc. We had a long discussion about it and possible solutions.
From a medical professional point of view, the more information the better to help assess the patient and place them with the right therapist etc. Maureen the counsellor said she finds it crucial to know a patients history before she sees them as it will help her and the patient, and would mean that she would have to take longer with them gathering information if it hadn't been filled out. It was agreed that the information would stay in the current form, but the cover letter would be amended to say why the information was needed, and state it was optional.

The pre-assessment forms ask you to state your difficulties as mild, moderate or severe. If you would like to know what these categories mean so you can tick the appropriate boxes, you can find the definition of these in the NICE Guidelines for ME/CFS (a quick internet search will find them). The library at Breightmet Health Centre has a Citizen's Advice Centre clinic on a Thursday by appointment, 10-12. The CAB are aware of the ME/CFS clinic and they are encouraged to provide updates to the clinic re benefits etc to help.

The team stressed it is important to keep in contact with your GP if receiving benefits or under medical treatment, so they are updated and in a position to help. Discharge letters will now include any equipment that may be required as follow up. In some circumstances housebound patients may receive a home visit.

We asked about funding (with fingers crossed). Hopefully the service will continue as it is, but reviews are always ongoing. We have every confidence in Simon and the team.
We were shown audits of the service. It is important patients provide feedback to ensure the running of the clinic and to obtain funding.

A member asked us to query if they could ever offer services like reiki or acupuncture? They cannot offer this unfortunately, as they were set up to deliver a very specific service.
They are unable to discuss individual patients with us due to confidentiality. It was a positive meeting and lovely to meet some of the new team members.

August 2014: We are sorry to tell you Helen Davin, senior neurological physiotherapist and team leader left the CFS/ME Service on 20 March 2014. She has been an integral part of the Service since it started in 2005. We will greatly miss her commitment and passion to help and support ME patients and their carers. Her professionalism in maintaining the profile of CFS/ME has been exceptional and she has always kept her knowledge of developing research and strategies up to date. We wish her well in her new career at Physio Worx, Carrington Lane, Sale, Manchester M33 5NL, where she will be available to see ME patients privately. Her telephone number is 07563770796 or helendavin@physioworx.co.uk. On behalf of the Support Group I gave Helen a basket of flowers and card to thank her for all the love and support she has shown to us over the years.

Also Janet Priest, the manager of the CFS/ME Service took early retirement on 28 February. Janet has been an important part of the Service since its inception in 2005 and worked very hard to ensure the Service developed to what we have now. She has always worked very closely with Dr Gaber to meet the needs of CFS/ME patients. Michelle Wardle, who has worked alongside Janet for several years, will take over the day to day management of the Service and Simon Crozier will be the Principle Service Lead. On behalf of the support Group I gave Janet a basket of flowers and card to thank her for all the love and support she has shown to us over the years. We wish her well in her retirement. Yvonne Leech A new O.T is joining the team from August.

ME/CFS Clinic Multi-Disciplinary Team Meeting 19th Nov 2013:
We met with Dr. Gaber and our therapists Helen, Maureen and Nicola at Breightmet Centre for Health. Members of the ME/CFS Support Group had been asked to submit items for the agenda in advance of the meeting and we took this opportunity to express concerns and queries that had been voiced by members.

We discussed the ongoing problems of DLA/PIP and ESA claims and the staff explained that the DWP have asked them only to write facts and not opinions; they have assured us that the letters they write to your GP will include the treatments and programme that you have attempted with their guidance and the results; this will give a much more personalised letter with a better overall picture of any problems you are facing; you are, of course, welcome to have copies of any of the letters, but we would advise you to keep copies of all medical letters you receive. We discussed the need for patients approaching their GPs for supporting evidence for benefit claims to make their GP aware of exactly what their care needs are e.g. due to pain/low energy/requires help from a carer or use of aids and adaptations to wash and dress, needs someone to prepare food as unable to stand for long periods etc.

We also discussed cancellation of appointments. The Bolton Trust has a policy that if a patient makes two cancellations of clinic appointments they must be re referred to their GP. The clinic staff try to be as flexible as possible and would always advise that you can ask for your treatment plan to be deferred to a later date if necessary; but unfortunately if you cancel twice they have no option but to refer you back to your doctor. Please note that asking for two appointments to be rearranged due to finding the date unsuitable also counts as two cancellations. Joanne is the reception clerk and she will take information from you to the team and she will try to accommodate your needs if possible (her day off is Thursday).

Please also note that failing to attend an appointment results in automatic discharge back to the care of your GP. We discussed the referral procedure in case of relapse; patients who have undergone the initial course of treatment in the previous 12 months may self-refer; for all other patients there must be a re referral from their GP and they assured us that all these are looked at by all the team and the usual course of action is that the therapist who had worked most with the patient initially will usually contact the patient. The patient will usually be offered an appointment with the most relevant therapist as a result. Caroline explained that a few people have contacted her to say that they have been declined further appointments following re-referral and Dr.Gaber said this was unusual and he could look at the particular cases if Caroline would like to provide him with the details, after gaining prior consent of the individuals concerned.

Melanie commented on the enormous contribution attending the Lifestyle Management Programme had made to her in terms of learning to manage her condition better. We discussed the issue of provision of GP education on ME/CFS in order that patients in Bolton may have equality of access to the Clinic. Dr.Gaber said he would be delighted to deliver a one hour presentation to Bolton GPs at one of their regular meetings and Melanie agreed to write to Dr.Bhatiani, Chair of Bolton Clinical Commissioning Group, to make this suggestion and request possible dates for this to take place.

It was proposed that the frequency of this Meeting could be changed from 6 monthly to annually. Any queries and issues arising between meetings can be followed up by the ME/CFS Support Group contacting the Clinic Team by phone, letter or email as appropriate.

PAM'S COMMENTS
I have worked with the ME Clinic team right from its inception and have always found them to be keen to help and willing to listen . They have amassed an enormous amount of expertise in helping people to self-manage this illness as much as possible.

Please ask yourself what it is that you want from the team, because we all know that at present there is no magic bullet, no easy cure, no "take this and you will be better". What the team will offer is absolutely invaluable, an accurate diagnosis. This is helpful as we then know what we are trying to cope with, also the Equity Commission acknowledge ME as a disability. I cannot over estimate the value of having acceptance and assistance from such a dedicated team.

However what we all have to realize is that lifestyle management and symptom relief, as advised by NICE guidelines is all that is available at present. The team will help you to personalise the programme to suit your needs and to help you to understand the factors which influence the ups and downs of your condition.

The team assure us that they are happy for GPs to refer patients to them even if they are not certain of the diagnosis of ME. The team can make an accurate diagnosis and if it is not ME, they may be able to suggest further referral on to a more suitable service department. We are very fortunate to have such an experienced and dedicated team who are led by such a knowledgeable and approachable doctor.

Bury/Bolton ME/CFS Service Update Summer 2013:

On the 18th June, we attended the 6 monthly meeting the group has with the ME Clinic team. Every 6 months, the team do an audit of the service looking at referrals and patient outcomes. The team have had many positive comments and many patients report an improvement in their condition.

We'd like to remind everyone that the clinic service is not just for newly diagnosed patients! You can get a referral to them regardless of how long you have had ME, and you will be seen as soon as possible.

If your condition deteriorates and you want to go back to the clinic, if this is within 12 months of your discharge, you can self-refer back, without the need to go via your GP. If more that 12 months has lapsed since you were discharged, you would need to ask your GP for a referral (this is because the team need up to date tests first).

There is no upper age limit to get a referral, you can be seen regardless of your age. If you would like to attend the clinic, please ask your GP for a referral to: The ME/CFS Clinic at Breightmet Health Centre, Breightmet Fold Lane , Breightmet, Bolton, BL2 6NT. Telephone: 01204 462 765

If you have any questions for the team, please tell us, and will pass them on.

In patient bed:
We have an in-patient bed for severely affected patients,which is in a neurological ward in St. Cyril's Rehabilitation Unit in Chester.

You must get a referral from Dr Gaber via the ME Clinic to attend! Ask your GP to make a referral to Dr Gaber at Breightmet Health Centre's ME Clinic (CFS/ME Clinic, Breightmet Health Centre, Bolton, BL2 6NT. Telephone: 01204 462 765.)
Dr Gaber wil then assess your situation and if appropriate, he will refer you to Chester in order to get the in patient bed.

St. Cyril's Rehabilitation Unit in Chester: Tel: 01925 423300 St Cyril's Rehab Unit Website
Address: Countess Of Chester Health Park, Liverpool Rd, Chester, CH2 1HJ.

Bury/Bolton ME/CFS Service Update February 2011:

Today I have attended the 6 monthly Service Development meeting. As usual it was a very constructive meeting.
I can report that during the current absence from the Service of Dr Wright his clinical role is being undertaken by Dr Gaber, who is a Nero Rehabilitation Consultant and the clinical lead of the Ashton, Leigh and Wigan ME/CFS Service.

Dr Gaber has been closely involved with our service from the beginning and some of you may have met him when the team have come to our Support Group Meetings. All new referrals from GPs will be looked at by Dr Gaber and the initial consultation will either be with him or where the diagnosis is clear he will refer the patient directly to a member of the multi disciplinary team.

Dr Gaber has reviewed the medical notes of all the existing patients and these patients will continue to be seen by the appropriate member of the multi disciplinary team or discharged back to the care of their GP if appropriate. If any member of the team has any medical concerns about an existing patient this can easily be escalated to Dr Gaber for advice and if necessary intervention.

Current waiting times for the service are meeting the 4 weeks target and I am impressed with the ongoing commitment of the team during this difficult time. The Service will continue to run on this basis until such time as Dr Wright's position in the Service has been decided, although the timescale for this is still not known. Also remember, once you have been discharged from the Service if you need further advice or review you can always self refer back to the Service within 12 months of your discharge. After that you will need to be referred back to the Service through your GP.

Yvonne Leech

Latest News:

There is a paediatritan who takes referrals from out of area. The PCT can buy in her services if they have no existing children's service.

Dr Esther Crawley
Specialist CFS/ME Services for children and adolescents
Royal National Hospital for rheumatoid disease
Upper Borough Walls
Bath BA1 1RL
01225 473 425

If you ask your doctor to refer you to the Bury or Bolton CFS/ME Clinics, please ask for a referral to:

CFS/ME Clinic
Breightmet Health Centre
Breightmet Fold Lane
Breightmet
Bolton
BL2 6NT

Telephone: 01204 462 765

The appointments are at Breightmet Health Centre in Bolton.
We now have an in-patient bed for Bolton.

The Ashton, Wigan and Leigh Clinic is now seeing patients! When you get referred by your GP, you will get an appointment at Leigh hospital to see Dr Gaber. They are currently looking for permanent premises to see patients. If you would like to self refer, please call Donna (admin lady) on 01942 264 321.
She will contact your GP and tell them about the service and all the necessary blood tests needed before you can be seen. The have an Occupational Therapist and Physio.
Download the Clinic Leaflet here and here

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. 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.

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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

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. 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.