medical supportand intervention

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ladynoodle
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by ladynoodle on Wed Aug 14, 2013 10:28 am

medical supportand intervention

I was diagnosedwith M.E. 10 years ago and my symptoms can go from being very mild to difficult to manage. When I was first diagnosed, I took part in the PACE study and ws seen by professionals on a regular basis. However, whenever that trial was over I was discharged and I now no longer see anyone and my gp admits they're no sure how to treat m.E. I now have no medical or pain support and I'm not sure who to turn to for advice on managing my M.E. now. Can anyone advise please?

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Dr Charles Shepherd
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Joined: Wed Aug 07, 2013 11:30 am

by Dr Charles Shepherd on Wed Aug 14, 2013 11:13 am

Re: medical supportand intervention

If your GP is unable to provide the management support that you need you can ask to be referred to one of the hospital based ME/CFS clinics that are available in most (but not all) parts of England.

The situation in Northern Ireland, Scotland and Wales is much more difficult because there are far fewer hospital-based referral services for people with ME/CFS.

There is a full list of all UK hospital-based referral services on the MEA website: http://www.meassociation.org.uk - along with contact details

If pain or sleep disturbance is a dominant symptom you also have the option of being referred to a specialist pain or sleep assessment clinic - this could be discussed with your GP

In practice, many people with ME/CFS end up becoming 'expert patients' by making use of the information that is available from the support charities and internet forums - but do take care with the latter because some of this information can be misleading, inaccurate and occasionally even harmful.
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

goblinff
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Joined: Sun Aug 11, 2013 6:21 pm

by goblinff on Wed Aug 14, 2013 11:29 am

Re: medical supportand intervention

so does that mean we are entitled to more treatment than just the initial referral?

I'm in the same boat as the OP (PACE trial, help during trial then nothing - they just signed me off and my then GP didn't even have the CFS/ME as an ongoing condition on the system because I'd been referrred and 'it was dealt with'), though my (new) GP has just referred me to our local ME/CFS clinic, they're insisting on a total re-diagnosis. Fine, cos it might be misdiagnosis/ something new.

But, why isn't there a facility for ongoing help - it's a fluctuating condition, you don't just need help at the beginnning but also when it changes.

I have no idea 'how much' help one is allowed to have? And all the GPs I've dealt with have no idea either. Is it written down anywhere?

dizzo2013
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Joined: Wed Aug 14, 2013 11:48 am

by dizzo2013 on Wed Aug 14, 2013 12:42 pm

Re: medical supportand intervention

My GP has finally diagnosed CFS after couple years of symptoms and referred me to CFS clinic in April, just been told they run one clinic a month so won't be seen until November and no other clinics nearby. Surely a wait of 7 months after diagnosis is unacceptable, taking into account such a long haul before diagnosis?. If this is such a common illness then why are there not more facilities available to help patients learn how to manage symptoms? I work part-time and have two children so find life extremely difficult as their dad passed away 8 years ago so have had to raise them on my own. I have also had several operations for breast cancer in 2010/2011 all of which I think has contributed to my getting CFS. Is there any other help I can get in the meantime - I am in Southwest area?

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Dr Charles Shepherd
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by Dr Charles Shepherd on Wed Aug 14, 2013 3:06 pm

Re: medical supportand intervention

I agree - people with ME/CFS need to have an accurate diagnosis followed by on-going management support that covers all aspects of management: physical, psychological (where appropriate) and social support (where appropriate)

For people with mild or moderate ME this type of help can be provided by a GP - provided they have the necessary interest, knowledge and experience (which some clearly do not).

If not, the GP must have the option of referring to a hospital based ME/CFS service for help.

For people with more severe ME/CFS, or a GP that isn't able to help, on-going management advice from a hospital based ME/CFS service should also be available

Sadly, this type of help and support is just not available in many parts of the UK - which is why the All Party Parliamentary Group at Westminster (current chair: Annette Brooke MP) prepared a report on NHS Service Provision. It's worth reading, and passing to your MP, if you are stuck with inadequate management input from either your GP or local hospital.
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

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