"MS is turning out to be a very lonely condition"

About: Blackpool PCT Blackpool Teaching Hospitals NHS Foundation Trust

(as the patient),

I was diagnosed with MS in February, 2008. The neurologist who told me was very brief and blunt, he told me that I would be supported by my doctor, MS Nurses service and the web site would lead me into loads more information. Well I have been to 4 doctors in my surgery, and by their own admission not one knows nothing about MS and have to refer to web sites and a prescription drug book. I had a problem with my bowels and was referred to the Continence service, after many phone calls I did see a District Nurse on their behalf nine months later. In May I asked to see a Physiotherapist, to help me with my mobility, I was sent a letter saying I would have a Home Consultation, 6 weeks after I phoned to ask when this would be, only to be told it was not going to happen as this particular physio. department could not deal with me as I had MS. I was then given another phone number to ring, where I was told I would have to wait at least 3 months before anyone could see me. I phoned to ask the neurologist (who diagnosed me) if he would see me again, to check that I was on the correct dosage of tablets and wanted to explain, other increased sensations. I was told he had discharged me, would not see me again. I would therefore have to start the process all over again. The MS Nurses service in my area is a bit hit and miss , after what we were told was 'reorganisation' we were told there would be someone answering the phone daily, this does not happen and most days the answer phone is not switched on, My biggest support has been from other MSers, on the MS Society website; hardly professional, but it is the only consistent thing I have to cling to. MS is turning out to a very lonely condition.
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Responses

Response from NHS Blackpool

Dear Wembley,

Thank you for bringing this to our attention. Clearly we are concerned to hear of your difficulties accessing appropriate services in a timely manner.

Your post raises a number of questions which we have raised with the NHS Trusts who provides these services in our area.

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Response from NHS Blackpool

Dear Wembley, further to my response regarding MS being a lonely condition we have now started discussions with a number of the services to which you referred. Principally these are the Continence service and the hospital where your diagnosis was made. Unfortunately we cannot identify your primary care practice from your post.

I have also discussed the issue with our Expert Patient Programme lead who believes that it may be worth you accessing this service which provides help, support and coping strategies for many people with long term conditions. The telephone number is 0800 988 5530. They will give you details of Expert Patient Programme courses in the Blackpool area.

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