UK: Specialist Rehabilitation Medicine Services for ME/CFS and Long Covid

Jonathan Edwards said:
Rehab units are designed to process patients like a sausage machine with a fixed period of rehab intervention. I don't see that as even relevant. What would they do? Anything worth doing can be done at home or in conversations in a clinic on a regular basis over a long period.
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I understand what you're saying.

It is just very frustrating to accept that GP management with ME specialist input is the best we have at the moment when compared to other similar conditions. But if it's the best way to prevent harm, then it is the best way to go.
 
livinglighter said:
It is just very frustrating to accept that GP management with ME specialist input is the best we have at the moment when compared to other similar conditions.
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But surely nobody actually wants to go into a rehab unit unless there is no alternative?
GPs referring to specialists for outpatient care is the ideal situation. The problem is just that there isn't much to offer.

I wouldn't compare to head injury. Most people with head injuries in rehab units have permanently lost the ability to move arms or legs or see or think. Rehab just helps a bit to learn how to work around that. It doesn't cure anything or improve anything.
 
Haveyoutriedyoga said:
Do most pwme stay on the books of the ME/CFS service or do a lot of people get discharged back to their GP (plan or no plan)?

What support do people actually get from the GP that is useful? I don't bother with mine when it comes to ME stuff.
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My GP said firmly that ME was a physical illness, just a mysterious one, and he offered to vouch for my disability credentials to anyone who assesses benefits. Can’t really ask for more than that. I have no idea what possible use an ME/CFS care plan would be.
 
Do most pwme stay on the books of the ME/CFS service or do a lot of people get discharged back to their GP (plan or no plan)?
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For Liverpool I have been told I can self refer back within 6 months or GP refer after but ONLY to ‘do’ the seminars. Therefore that’s the end of the road for me until things change.

The seminars are stuff we know already. The useful aspect for me was getting a detailed letter from a supportive OT to outline to my GP what my level of functioning is and some suggestions as to how he can help (insomnia, OI, blue badge etc). That is the only realistic care plan for my case at this time.

I have a phone call with him Friday so I will see what effect that has.
 
Fizzlou said:
For Liverpool I have been told I can self refer back within 6 months or GP refer after but ONLY to ‘do’ the seminars. Therefore that’s the end of the road for me until things change.

The seminars are stuff we know already. The useful aspect for me was getting a detailed letter from a supportive OT to outline to my GP what my level of functioning is and some suggestions as to how he can help (insomnia, OI, blue badge etc). That is the only realistic care plan for my case at this time.

I have a phone call with him Friday so I will see what effect that has.
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6 months is no time at all, it takes years to adjust to having ME, it fluctuates so you're constantly getting used it it, and personally I'm constantly feeling like I'm adjusting somehow. To be denied 121 support in the future after such a short time is insane.
 
Jonathan Edwards said:
But surely nobody actually wants to go into a rehab unit unless there is no alternative?
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I'd say it depends because PCS patients are also told to pace and carry out activity below a specified anaerobic threshold. It's the same technique provided to me by my ME/CFS specialist. A rehab centre might use similar techniques for both conditions if they recognise the same symptoms. It might just be best for me to ask and find out.

Jonathan Edwards said:
GPs referring to specialists for outpatient care is the ideal situation. The problem is just that there isn't much to offer.
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It would be good to know what specialists remain at the clinics providing advice.

Jonathan Edwards said:
I wouldn't compare to head injury. Most people with head injuries in rehab units have permanently lost the ability to move arms or legs or see or think. Rehab just helps a bit to learn how to work around that. It doesn't cure anything or improve anything.
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I wouldn't say I'm comparing to head injury patients with severe loss of function, such as Kate Garraway's husband. I'm comparing to those with mild head injury with severe and fluctuating sequelae of ME and LC like symptoms, who can also push exertion limitations then experience adverse PEM symptoms.
 
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Trish said:
I think care plans are important for people with severe and very severe ME. They can include vital info on who to contact for help with particular problems such as eating, plans for regular reviews and who will do them and where (at home), stuff about and for carers for personal care, any medications for things like sleep and nausea etc.
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I attach a link to the job description from the Cornwall ME/CFS that was advertised a few years ago: https://meassociation.org.uk/wp-con...e-Job-Advertisement-Medical-Lead-01.08.20.pdf

I always find these types of docs can be interesting sources because they sometimes contain info that tells the structure and remit. In this instance it seems to 'outreach' within the hospital admissions for example ie I assume to avoid those awful situations you hear about when someone gets taken into hospital for something else and their needs aren't understood.

I think it is worth us collecting case studies of services that have the right emphasis and ideas? Frankly I find sending someone off to a few seminars with whatever course convenor, and noone being brave enough or well-positioned to even write a letter to the effect of pacing, medical, adjustment (and form filling support etc) needs is literally changing nothing. They will all happily just take the same staff doing what they want as a minimum nod to the guidelines and then try and point to 'well everyone as does this' as an excuse if there aren't a few 'someone else manages to at least try and do this properly, so what would you say yours is by comparison - a pretence' things to flag up.

I get the impression the medical profession just thinks we aren't important and don't matter. What would they know if they never read any information on it in order that they never inform themselves to the contrary.
 
livinglighter said:
I'd say it depends because PCS patients are also told to pace and carry out activity below a specified anaerobic threshold. It's the same technique provided to me by my ME/CFS specialist. A rehab centre might use similar techniques for both conditions if they recognise the same symptoms. It might just be best for me to ask and find out


It would be good to know what specialists remain at the clinics providing advice.



I wouldn't say I'm comparing to head injury patients with severe loss of function, such as Kate Garraway's husband. I'm comparing to those with mild head injury with severe and fluctuating sequelae of ME and LC like symptoms, who can also push exertion limitations then experience adverse PEM symptoms.
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Kate Garraway's husband had severe covid and not a head injury. Are you mentioning him because he is being pu through rehab? - I ask as I have no idea on whether he is or isn't but your comment could be suggesting that is the case. I must admit I haven't kept pace but know from social media he's flown across the world to try various treamtnets (yet don't know what they are).
 
[QUOTE="bobbler said:
Kate Garraway's husband had severe covid and not a head injury. Are you mentioning him because he is being pu through rehab? - I ask as I have no idea on whether he is or isn't but your comment could be suggesting that is the case. I must admit I haven't kept pace but know from social media he's flown across the world to try various treamtnets (yet don't know what they are).
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Coma is actually a head injury. He also suffered a coma as a result of Covid-19.

The rehab centre he was flown to discussed traumatic brain injury as a result of the brain imaging they carried out. They found white matter legions on his brain. The clip was quick but it might still be available on i-player.

I mentioned him because I consider him an example of the patients Jonathan might be referring to. At some point, his UK neurology team advised improvement for him would be holding a hairbrush.
 
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I spoke to a 'Specialist Rehab Medicine Service'. ME is classified as a neuro condition, so I opted to talk to a neuro-rehab service. I asked if the service accepts pwME. I was informed they provide services to patients with any neurological condition subject to CCG funding heavily influenced by locality. Services are provided to meet a range of different needs.

Options consist of Community services where neuro therapists visit patients in their own home and in-patient rehabilitation.

I'm interested in finding out if they have the know-how to deal with PEM, as I notice both services now accept those who have recovered from COVID-19 and are experiencing neurological symptoms.

The centre also does not accept patients requiring level 1 rehabilitation which appears to be for severe complex cases.

If fatigue clinic is not a suitable place for severe patients, perhaps ME specialists can advise GP's of the skill set neuro-rehab centres need to have before any referrals should be considered. That might be a way of making the new guideline and current healthcare provisions work for moderate-severe pwME.

I've been informed on several occasions that an OT assessment is required in order to receive social services activities of daily living support. You can only obtain that engaged in some kind of OT supported service.

Neurological Rehabilitation Centre (NRC)


The community service
Referrals will be considered for people who:

  • are registered with a Barnet GP*
  • are 18 years or over
  • have provided consent for referral
  • have a neurological condition – eg multiple sclerosis (MS), motor neurone disease, cerebral palsy, acquired brain injury, spinal cord injury, ataxia
  • require assessment and/or therapy intervention
  • require monitoring via the long term conditions (LTC) register
  • we do not see people who have had a stroke or idiopathic parkinson’s disease (unless for vocational Rehabilitation)
  • we are now seeing patients who have recovered from COVID-19 and are experiencing neurological symptoms
We can consider out-of-area referrals in negotiation with local services and local commissioners.

The in-patient service
Referrals will be considered for people who:

  • are registered with a Barnet, Camden, Enfield, Haringey or Islington GP
  • are 18 years or over
  • have provided consent for referral
  • have a neurological condition, eg multiple sclerosis (MS), traumatic brain injury, spinal cord injury, peripheral neuropathy or stroke
  • require in-patient rehabilitation
  • have agreed CCG funding
  • we are now seeing patients who have recovered from COVID-19 and are experiencing neurological symptoms

We are unable to accept patients who require:
  • tracheostomy, respiratory support or nasogastric feeding
  • highly specialist services of a regional (level 1) neurorehabilitation service or spinal injuries centre
  • stroke rehabilitation, unless agreed that the local services are unable to meet the patient’s needs
  • social respite.
https://www.royalfree.nhs.uk/servic...ical-rehabilitation-centre-nrc/#tab-referrals
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Haveyoutriedyoga said:
Do most pwme stay on the books of the ME/CFS service or do a lot of people get discharged back to their GP (plan or no plan)?

What support do people actually get from the GP that is useful? I don't bother with mine when it comes to ME stuff.
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6 telephone calls (or less sometimes if you don't play their daily diary game) and discharge back to GP - awaiting a re referral and further payment patient tariff to the clinic on the way.... patient tarifs vary a lot
Ours is/was low PW and Barts was 10 x for less cover in 2008
 
bobbler said:
I attach a link to the job description from the Cornwall ME/CFS that was advertised a few years ago: https://meassociation.org.uk/wp-con...e-Job-Advertisement-Medical-Lead-01.08.20.pdf

I always find these types of docs can be interesting sources because they sometimes contain info that tells the structure and remit. In this instance it seems to 'outreach' within the hospital admissions for example ie I assume to avoid those awful situations you hear about when someone gets taken into hospital for something else and their needs aren't understood.

I think it is worth us collecting case studies of services that have the right emphasis and ideas? Frankly I find sending someone off to a few seminars with whatever course convenor, and noone being brave enough or well-positioned to even write a letter to the effect of pacing, medical, adjustment (and form filling support etc) needs is literally changing nothing. They will all happily just take the same staff doing what they want as a minimum nod to the guidelines and then try and point to 'well everyone as does this' as an excuse if there aren't a few 'someone else manages to at least try and do this properly, so what would you say yours is by comparison - a pretence' things to flag up.

I get the impression the medical profession just thinks we aren't important and don't matter. What would they know if they never read any information on it in order that they never inform themselves to the contrary.
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Yes to 'I think it is worth us collecting case studies of services that have the right emphasis and ideas?'

We did this- identifying key data and costs for Specialist Clinics( after DoH Roll Out 2005/2006) in 2008 to take to the Strategic Health Authority Scrutiny and Overview for all services in our East of England area. and included Barts as a comparison.

07. Summary of Patient Change Audits 2012 -2016

Many of these services have been closed down.

I could upload the chart if anyone is interested as I did as a baseline from 2008?

All Services commissioned have to produce an 'Annual Change Report' (Quality Accounts?) and issue it to their commissioning and contract staff in CCGS. We have this as co producers of service have audited this and shamed the service deterioration through Joint local Health Overview & Scrutiny.

LA Scrutiny staff have been fantastic at scrutiny of service, holding to account as have elected members Councillors!!!!
See here http://nandsme.blogspot.com/2017/

Meeting of the Joint Health Overview and Scrutiny Committee (HOSC) 4 April 2017 - Meeting Documents


The meeting documents have now been published on the Norfolk County Council website.

This is a very long document and also contains issues that the Joint Committee are considering other than the ME & CFS Service.

A list is below of the individual documents relating to the ME & CFS Service.

01. Public Participation Session - At the January 2017 Joint HOSC meeting, with the permission of the Chairman, Barbara Robinson, a member of the Patient / Carer Group spoke about the ME & CFS Service.

02. Update on the ME & CFS Service by Gt Yarmouth & Waveney CCG at the January 2017 Joint HOSC meeting

03. Suggested Approach from the Joint HOSC regarding the ME & CFS Service - March 2017

04. Timeline of submissions to the Joint HOSC regarding the ME & CFS Service between 2008 and 2017

05. Briefing from Gt Yarmouth & Waveney CCG - March 2017

06. Feasibility Assessment of Implementation of a Consultant Led ME & CFS Service in Norfolk & Suffolk - November 2016

07. Summary of Patient Change Audits 2012 -2016

08. Patient Change Audit - January 2016

09. Children's Survey - December 2013

10. Briefing from ECCH - Provider of the ME & CFS Service - March 2017

11. Complaints about the ME & CFS Service 2014 -2017

12. ECCH Patient Survey January 2014

13. Report of Patient Experience from the Patient / Carer Group - March 2017

14. All the Meeting Papers for the 4 April 2017 Joint HOSC

A representative from the Patient / Carer Group will be attending the meeting. A presentation will be given at the discretion of the Chair of the Joint Committee.

Suffolk Commissioning are leading the service development process and will also be attending the meeting.

Update: Minutes of the meeting can be found here
 
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livinglighter said:
If fatigue clinic is not a suitable place for severe patients, perhaps ME specialists can advise GP's of the skill set neuro-rehab centres need to have before any referrals should be considered.
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I am not sure what referral to a rehab centre is expected to achieve? If there is an ME specialist then surely they should manage care? They should have the skill set? The skill set is mostly understanding how little we know about ME and having practical experience of patients' accounts of how they manage. ME experts should have access to domiciliary outreach provision both by themselves and by therapists if needed.
 
Jonathan Edwards said:
I am not sure what referral to a rehab centre is expected to achieve?
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I'm hoping they will have a neurological approach instead of a biopsychosocial one and experience with similar conditions will help them interpret my needs. Plus it has been mentioned it is for severe patients which I am. if it's not helpful I'll discharge. My fatigue clinic experiences have been awful.

Jonathan Edwards said:
If there is an ME specialist then surely they should manage care? Should they have the skill set?
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It's currently not known if ME specialists are managing care.

It's probably important to know the fatigue clinic's policies and procedures, which may differ. Otherwise, we won't know what is provided or what has changed following the new guidelines. I can only talk about my past experiences and a few other patient accounts. Most people only see a ME specialist in a fatigue clinic once during their assessment. For the rest of the time spent there, you are only provided with self-manage techniques. There may be no further involvement from the ME specialist.

In some cases, like one I experienced, you may never see the ME specialist because some staff can carry out assessments without a doctor. Or, you are seen by ME specialists for a limited number of sessions and are told they do not make secondary care referrals as your GP needs to do it. The only thing the specialist did was tell me what they thought was the cause of my symptoms, which was useless as I couldn't make secondary care referrals.

Based on what I have experienced and have recently been told by patients and service providers, I am not going back. My last NHS ME diagnosis letter stated that pwME also commonly suffer from depression quoting Simon Wessley et al. Even though I wasn't diagnosed with depression. :eek:

Since the new guidelines have been published, my GP made another referral. I was told by the fatigue clinic the current wait time could surpass a year, and the fatigue clinic is not appropriate for me as I'm not able to self manage. I've posted the full account elsewhere, but I was basically informed my GP needs to make secondary care referrals for individual symptoms at this stage. They didn't even suggest for my GP to contact the specialist for help with doing that.


Jonathan Edwards said:
ME experts should have access to domiciliary outreach provision both by themselves and by therapists if needed.
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That wasn't my experience at all with two different ones on the NHS. A private ME expert said I need access to a specialist OT, which on two separate occasions at the NHS fatigue clinic I did not have access to and that decision was made by the specialists.
 
Haveyoutriedyoga said:
Oh so you can now get investigations and support for symptoms? No longer going to get told by the GP that it's just ME and there's nothing anyone can do? (I'm being sarcastic)
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We must all have the same life!

My GP can try roping in a specialist but given all this ‘it will take time’ talk from NICE, I’m not sure what’s to be expected.

All I know is that I’m somehow deteriorating right now in real-time.
 
Me or my family will now investigate specialist sports medicine centres to gain insight about what happens there as that is where concussion treatment is delivered.
 
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