Could this be developed into a proposal to put to the Health and Social Care Minister ?

[Skylark]

If there is to be a full parliamentary debate in the House of Commons in the autumn I believe we need to be in a position of not just discussing what has gone wrong for ME sufferers but also what we want to begin to put it right.

Could a possible question and suggestion for the Health and Social Care Minister be -

Whilst NICE review their ME guidelines and biomedical research is undertaken to find the underlying cause(s) of ME, as an interim measure couldn't ME suffers at least be provided with a basic symptom based (not PACE based) care and support service by the NHS - which could then be modified and adapted as new information becomes available ?

And as there is a similarity of symptoms with MS couldn't this be fairly quickly set up on an NHS regional basis by adapting the following existing NHS MS Service for PWME needs ?

The MS Service provides specialist therapeutic and practical support to people with MS, their families or carers at the time they need it most.

The service comprises nursing, therapy and pharmacy support.

The MS Service provides:

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  • support and information for patients who have recently been diagnosed with MS
  • support for patients with MS and their carers via telephone, clinics or home visits
  • specialist assessment and advice on the management of MS
  • case finding for specialist disease modifying treatments
  • information and monitoring of prescribed disease modifying medications, when required
  • links between community and acute, outpatient or specialist tertiary care setting
  • case management for patients with complex needs
  • links to other services supporting people with MS, making referrals when required
  • education and training for those involved in MS

Getting in touch with the MS Service

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  • If you have been diagnosed with MS and live in ???????, you can ask your GP, neurologist or any other healthcare professional to refer you, or you can self-refer by contacting the MS Service on 020 8*** ****.
  • When the MS Service gets your referral we will get in touch and arrange to see you. Once you are known to the service you can contact us at any time.
  • Between appointments, you should contact the MS Service if you are concerned about new symptoms you are experiencing, you think you may be having a relapse, you are finding it difficult to cope with any aspect of your MS, you need advice about medication or you have a question about your MS.
  • You should get in touch by calling the number below. However, please remember that your call may not be returned the same day.
    
    Please note this is not an emergency service. In an emergency please contact your GP, NHS 111 or call an ambulance.'

Because when I change MS to ME in this description I find it would give me a lot of what I need to help me manage my illness whilst I wait for a cure.

Is this the sort of idea that's worth exploring and discussing before the autumn ?

Possibly with a view to using our own hard won knowledge and experience of ME to design, as a group, a workable outline proposal for a bespoke NHS ME Service.