A thread on what people with ME/CFS need in the way of service

[Trish]

Some of us don't live anywhere near a major university research hospital where research and leading clinics are likely to be centred. I fear we will be left out of any specialist doctor led care services which are being rightly described as needed. The difficulty with travel becomes magnified when the nearest such centre might be 100 km away. We therefore need a whole medical specialism to take on ME/CFS as part of their responsiblity in every area of the country, and to have specialist nurses able to travel a wide area to visit patients, and consultant willing and able to do home visits too.

Basic need:

Consulatant diagnosis and annual checkup if wanted accessible for all severity levels.

Specialist nurses working with the consultant

• acting as as contact point for patients available by phone and email and able to do home visits
• to advise on activity management,
• liaise with schools and employers,
• write reports or see that the consultant does them for benefit claims,
• assist with getting home carers
• and OT assessment for equipment,
• and ensure timely referrals to counsellors and dieticians well before the need for either of these becomes critical.

Well informed hospitals with priority for single rooms for very severe cases who need to be in hospital, 'hospital at home' where possible.
Maybe arrangement with hospices for some very severe cases who need nursing care.

NO BACME clinics.

No separation in services for mild/moderate and for severe/very severe. Especially important for continuity of care as any individual is likely to cross over between severity levels over their lifetime.

 

[OrganicChilli]

Can we get dental home visits? What about preventive checks like cancer screenings?

 

[alex3619]

Well here it is folks. Get posting.

I think they need to be referable to a clinic with a physician in a standard medical speciality (not rehab) for an assessment of their problems with a waiting time of around 2-3 weeks on average.

I am facing this kind of thing in about three and a half hours for Australia's MyAgedCare support, but with a public servant who will run me through a very long interview process designed mostly for just older people, not people with complex disability. Setting up specialized assessment services have been needed for a long time. However it will take a lot of analysis, consultation and ongoing dialogue to get the services that we really need on an individual basis. Probably a few field trials and published papers as well.

 

[Utsikt]

Can we get dental home visits? What about preventive checks like cancer screenings?

Eye exams as well. Anything that can be done at home for the severe.

 

[Eleanor]

I wonder if it would be interesting to find examples of briefs for NHS services for other long-term disabling conditions, maybe to borrow ideas but also when it comes to presenting some kind of wish list to decision makers - to be able to say "look, this is the provision that people with other conditions can expect, and people with ME/CFS deserve an equal level of care".

 

[Eleanor]

For example, here are parts of what NHSInform says about motor neurone disease (I have a friend who has just been diagnosed with it, so I was looking at this recently). https://www.nhsinform.scot/illnesse...ves-and-spinal-cord/motor-neurone-disease-mnd

After you’re diagnosed you should be provided with contact details of an MND care specialist. These are healthcare professionals with specialist experience caring for people with MND. They’ll be able to give you (and your family) extra support after the diagnosis and during your time with the illness.

Although there’s no cure for MND, there are treatments available to help relieve the symptoms.

A team of healthcare professionals will work together to help care for you. This multidisciplinary team typically includes:

• a neurologist and an MND care specialist
• a specialist in breathing (respiratory specialist)
• physiotherapists to advise on mobility aids
• occupational therapists to assess the need for adaptations to living environments
• speech and language therapist to provide help with communication and swallowing
• dieticians to support nutrition

As the conditions advances, you might also need palliative care.

Research and drug trials​

You might be given the opportunity to take part in research, including drug trials. Your MND care specialist and neurology consultant can provide further information on this.

Advice for carers​

Caring for someone with MND can be both physically and emotionally demanding. It’s likely you’ll need a wide range of support.

 

[Felis Catus]

Can we get dental home visits? What about preventive checks like cancer screenings?

I can only speak for the UK. Depending on where you live, there might be private mobile dentists and some private dental practices might offer home visits. I saw in a Facebook group people mentioning NHS dental visits but I've never seen an NHS dentist, so it didn't even cross my mind to check. You might need a referral for it.

My GP surgery told me they were going to start offering at home smear tests this year.

Eye exams as well. Anything that can be done at home for the severe.

UK - yes, Specsavers for free for those who are housebound. They didn't ask me for any documents to confirm that but maybe it depends on whom you speak to.


I just thought I'd share this in case it helps someone. The goal would be to have those options everywhere.

 

[Kitty]

I think for newly ill people, a diagnostic service led by a physician who:

• has the training to exclude alternative diagnoses;
  
  
• explains that some people recover, but others don't;
  
  
• tells them they can sometimes help with specific symptoms, but there is no treatment yet for the underlying disease;
  
  
• refers them to good quality sources of advice;
  
  
• signposts patient advocacy and support platforms;
  
  
• makes notes detailed enough to contribute medical evidence if the person has to go through ill-health retirement or claim benefits;
  
  
• sees them maybe once a month for the first six months, then again for a full review after a year;
  
  
• ideally, is interested enough in ME/CFS to want to contribute to a better understanding of the natural history.

Also, I wonder if a peer advice project would be useful, where people who've been ill quite a long time could contribute paragraphs about the journey they went on. For instance:

• clinging to the belief there must be something that helps, followed by trying anything and everything to no avail;
  
  
• suspecting they may have made their illness worse by trying too hard to keep up their lives;
  
  
• discovering there are patients who've been harmed by inappropriate advice, which was given to them by reputable healthcare institutions and medical professionals;
  
  
• learning that most ME/CFS research ranges from useless to fraud-adjacent, and it doesn't take long to get the hang of how to spot it;
  
  
• realising people who claim to be experts usually aren't – real experts admit they know almost nothing;
  
  
• grasping the sheer scale of crappy alternative medicine that is thrust in our faces at every turn, most of which is useless and some of which is risky;
  
  
• the whole internet thing – misinformation from other patients, private doctors offering expensive and unproven treatments, the mushrooming of so-called syndromes.

Charity websites sometimes have pages like this, but they tend to be pretty anodyne and are rarely detailed enough to be satisfying. People who've recently become ill often feel a drive to do something, and this kind of peer learning is useful. If it's done well it can be more convincing than doctors; patients sometimes feel their GPs are overly conservative or suspect they don't want to offer some treatments because they're very expensive.

 

[Sasha]

My GP surgery told me they were going to start offering at home smear tests this year.

Home-testing kits that you use yourself are supposed to be being rolled out in England this year.

UK - yes, Specsavers for free for those who are housebound. They didn't ask me for any documents to confirm that but maybe it depends on whom you speak to.

Same here - I've had free home optician visits from Specsavers.

I've also shelled out for a home visit from a private dentist but there are some things they can't do at your home and if you can't go to the clinic, you can't get the treatment.

 

[alex3619]

Just had my MyAgedCare assessment. I will get basic services for sure, along the lines I got last year, but more requires administrative approval. Even the assessors cannot tell how that will go, the system is new and its all done by AI algorithm, which nobody is clear about. AI will determine assessment, doctors or other health or allied professionals are out of the loop. AI is subject to GIGO in how it is set up and learns.

 

[Suffolkres]

1. Physician-led service (not rehab or psychiatry)

2. Specialist nurses.

3. Domiciliary service.

4. Inpatient facilities for severe and very severe.

5. Regular follow-ups.

6. Links to research institutions.

7. Honest evidence based management advice and prognosis.

8. No unevidenced therapies.

9. Access to psychological support (ie well informed counselling) if needed.

10. Access to well-informed OTs for home adaptation advice etc if needed.

Excellent Robert
Just add compliance with applicable legislation and demonstration of a Duty of Care?

 

[Suffolkres]

Some of us don't live anywhere near a major university research hospital where research and leading clinics are likely to be centred. I fear we will be left out of any specialist doctor led care services which are being rightly described as needed. The difficulty with travel becomes magnified when the nearest such centre might be 100 km away. We therefore need a whole medical specialism to take on ME/CFS as part of their responsiblity in every area of the country, and to have specialist nurses able to travel a wide area to visit patients, and consultant willing and able to do home visits too.

Basic need:

Consulatant diagnosis and annual checkup if wanted accessible for all severity levels.

Specialist nurses working with the consultant

• acting as as contact point for patients available by phone and email and able to do home visits
• to advise on activity management,
• liaise with schools and employers,
• write reports or see that the consultant does them for benefit claims,
• assist with getting home carers
• and OT assessment for equipment,
• and ensure timely referrals to counsellors and dieticians well before the need for either of these becomes critical.

Well informed hospitals with priority for single rooms for very severe cases who need to be in hospital, 'hospital at home' where possible.
Maybe arrangement with hospices for some very severe cases who need nursing care.

NO BACME clinics.

No separation in services for mild/moderate and for severe/very severe. Especially important for continuity of care as any individual is likely to cross over between severity levels over their lifetime.

Our Suffolk Spec includes domiciliary care...

 

[Jonathan Edwards]

I wonder if it would be interesting to find examples of briefs for NHS services for other long-term disabling conditions, maybe to borrow ideas but also when it comes to presenting some kind of wish list to decision makers - to be able to say "look, this is the provision that people with other conditions can expect, and people with ME/CFS deserve an equal level of care".

This seems a very useful idea, but

For example, here are parts of what NHSInform says about motor neurone disease

looks all too much like a box tick of multidisiciplinary team names, including, thank you very much, a palliative care member for when you're just about to die. It would be good if there were lists that actually covered specific care items like glasses and dental hygiene. Maybe some of that can be gleaned from these lists though.

 

[Jonathan Edwards]

Taking Robert's list as a very reasonable looking framework for what seems to have emerged as a near consensus, not just here but talking to physicians elsewhere, I wonder about some tweakings:

1. A service primarily delivered by a hospital-based physician

2. Dedicated nurse practitioner support for ongoing practical care.

3. Initial assessment in a clinic within an established specialty department such as neurology or rheumatology, with average waiting times of ~2-3 weeks, with an option for domiciliary assessment for severe cases.

4. Both domiciliary and clinic service for further management, as needed. Domiciliary care to include that provided for other seriously disabling diseases such as motor neuron disease (sight and hearing aids, dentistry etc.)

5. Protocols for providing ME/CFS-suitable Inpatient beds (single rooms with reduced environmental stimuli) for intercurrent medical care in all hospitals with clinic bases.

6. Dedicated units for crisis care for very severe ME/CFS cases, under a physician with a special interest, with protocols for providing ME/CFS-suitable inpatient beds in association with nutritional units for feeding support in regional hospital centres.

7. Regular follow-up by a physician, or where no significant medical change is expected, a nurse practitioner, for assessment of ongoing ME/CFS status and detection of other coincident conditions. Intervals may range from, initially, a few weeks, to six monthly or annual review, as judged needed by patient and health care professionals.

8. Taking opportunities to site regional centres alongside research institutions with an interest..

9. Honest evidence-based management advice and prognosis and

10. No unevidenced therapies unless as part of well-designed controlled trials.

11. Emphasis on support through validation and shared experience, including information about good quality charity resources, with access to professional emotional/psychological support (ie well informed counselling) if needed.

12. Access to a well-informed occupational therapist for home adaptation advice etc if needed and to dietitian if indicated.

13. Facilities for consultation on line (Telehealth) for situations where people cannot readily access either clinics or domiciliary services.

14. Provision of long term care facilities for the very disabled and have no support from living independently at home, on an equal basis to those for other disabling musculoskeletal and neurological disorders.

 

[Sasha]

Taking Robert's list as a very reasonable looking framework for what seems to have emerged as a near consensus, not just here but talking to physicians elsewhere, I wonder about some tweakings:

That sounds amazing!

 

[obeat]

Does this mean that DHSC are reconsidering?

 

[Evergreen]

I'd like a dietician assessment for anyone of any severity with difficulty tolerating normal diet, with follow-up as required.

The idea would be to

• make sure people are getting the best nutrition they can get even if there are certain things they cannot eat, or if they are less able or unable to prepare food
• make sure people aren't on unnecessarily restrictive diets
• have people linked in with a dietician already, so if things start going really wrong, they get help quickly
• have a set of dieticians start to develop specialist knowledge of the various issues people with ME/CFS at various severities

I think if you had a physician, clinical nurse specialist and dietician who knew the person with ME/CFS and eating difficulties before they were admitted to hospital, and who had working relationships with the in-patient unit the person would be admitted to, there would be better outcomes, fewer deaths, a lot less suffering for both pwME and their carers, and a less challenging experience for hospital staff too.

 

[Jonathan Edwards]

Does this mean that DHSC are reconsidering?

No.

 

[Jonathan Edwards]

I'd like a dietician assessment for anyone of any severity with difficulty tolerating normal diet, with follow-up as required.

Fair enough. Added in.

 

[Clio]

I don't think any place in current hospitals is good enough for the very severe. Building properly sound and light insulated rooms would be very expensive as major construction would be requested. But that is the bare minimum - place without stimulation so a person can properly rest.