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

Jonathan Edwards said:
I have now sent the draft suggestions to the DHSC people involved, in response to an email. Unfortunately, DHSC do not want me to share their slides with the patient community. They say things are likely to change. Hopefully some things will.
Click to expand...
Thank you for sending the suggestions and asking for the slides. The lack of transparency is annoying - our lives, government money. It's hard to see a good justification for the secrecy.

Is there any indication of when the 'something that is different' information will be available, and to who?
 
Sorry I can't follow all this thread and I don't know whether these things have been mentioned or whether they apply to the conversation.

Assessment appointments to be carried out with a bed a available for the patient to lie down.

Check all other illnesses have been ruled out by the GP.

After 3 months and the patient is still very ill and likely to be ME/CFS, practical and realistic help with income support benefits should be signed off for 2 yearly review because there's no quick fix recovery with ME/CFS. This will release patient from the added stress of 3 monthly reviews.

Regular appointments should be limited if patient is too sick.
 
The ForwardME service subgroup are going to work on a suggested service format and seem keen to capitalise on the S4ME material.

There was debate about how much detail is worth trying to work in to any proposal. The general feeling seemed to be that even if the DHSC was not actively engaging in dialogue on this that having a detailed proposal of what patients want was worth having, partly because the DHSC proposal at present seems quite broad in what might be fitted within it by commissioning units.

I thought I might look again over the next few days at how much detail we have in the S4ME draft and see if there are areas where more might make sense.

In relation to that I have a practical question for all members. It is easy to identify things like making a diagnosis, explaining the dangers of tyring to push through, and providing feeding support for those failing to get nutrition. What i less clear to me is what people thin would be reasonable to ask for in terms of domiciliary services for the severe and very severe in terms of ongoing support for coping with daily activities and symptoms. Specific examples would help. I think the ForwardME people are also uncertain as to exactly what is reasonable to ask for. Comparison with something like provision for MS may be helpful.
 
I have had a thought about the blanket no off label drugs stipulation.

If we have a situation in the near future where, say, daratumumab is successful in phase 2 and the improvements are as striking as in the pilot, and people begin to get it off label privately - might we not encounter a problem getting it prescibed for patients on the NHS, with admin people pointing to this stipulation and saying 'ah but you said absolutely no off label treatments'?

Just a thought - obviously the NHS might drag their feet anyway but I think it's important to get an effective drug to people who can't afford private care as quickly as feasibly possible. And it would be a shame to write ourselves into a corner here.
 
V.R.T. said:
I have had a thought about the blanket no off label drugs stipulation.

If we have a situation in the near future where, say, daratumumab is successful in phase 2 and the improvements are as striking as in the pilot, and people begin to get it off label privately - might we not encounter a problem getting it prescibed for patients on the NHS, with admin people pointing to this stipulation and saying 'ah but you said absolutely no off label treatments'?

Just a thought - obviously the NHS might drag their feet anyway but I think it's important to get an effective drug to people who can't afford private care as quickly as feasibly possible. And it would be a shame to write ourselves into a corner here.
Click to expand...
It seems to be called EAMS (Early Access to Medicines Scheme) for the NHS. I think there will be a distinction between such a scenario and what is now considered off-label which is stuff like LDN. Nobody is thinking of Daratumumab when they think of off-label.
 
V.R.T. said:
If we have a situation in the near future where, say, daratumumab is successful in phase 2 and the improvements are as striking as in the pilot, and people begin to get it off label privately - might we not encounter a problem getting it prescibed for patients on the NHS, with admin people pointing to this stipulation and saying 'ah but you said absolutely no off label treatments'?
Click to expand...

That is how it works in the NHS anyway, for expensive drugs. I could not prescribe rituximab on the NHS until it had a license despite having very solid evidence. I provided it to people as part of pilot studies that I then published, funded by whatever means I could find, and that included some patients paying for drug themselves while all other elements of care remained NHS. (That may be more difficult now.)

I don't think people should be receiving daratumumab unless we have really solid evidence for effectiveness. I am pretty sure that Fluge and Mella would not want it. There may be a tricky period before there is a license but I see no possibility of getting around that in the NHS whatever goes in to a suggestion for service structure.
 
EndME said:
It seems to be called EAMS (Early Access to Medicines Scheme) for the NHS. I think there will be a distinction between such a scenario and what is now considered off-label which is stuff like LDN. Nobody is thinking of Daratumumab when they think of off-label.
Click to expand...

I am not up to date on this but this sounds like a mechanism for allowing access in some cases before the MHRA grants a formal license. That might apply but there will be rules and, as you say, this is really outside the purpose and likely scope of a policy of restricting off-label usage.
 
Jonathan Edwards said:
I don't think people should be receiving daratumumab unless we have really solid evidence for effectiveness. I am pretty sure that Fluge and Mella would not want it
Click to expand...
I wouldn't be recommending people get it now but I for one will be trying to get it if phase 2 responses looks like phase 1. I know I will not be alone in that. I make no encouragement to others to do the same, that is just how things are. And we have a lot of people in very dire, life threatening situations who should not be left to die before a phase 3 occurs because they aren't lucky enough to have well off parents.
EndME said:
Nobody is thinking of Daratumumab when they think of off-label.
Click to expand...
Nobody here is, but we are not the people who will be providing services.
 
Jonathan Edwards said:
What i less clear to me is what people thin would be reasonable to ask for in terms of domiciliary services for the severe and very severe in terms of ongoing support for coping with daily activities and symptoms. Specific examples would help. I think the ForwardME people are also uncertain as to exactly what is reasonable to ask for. Comparison with something like provision for MS may be helpful.
Click to expand...
Normal aids for ADL and mobility aids. Normal aids for personal hygiene when in bed. A good OT can do a lot if they stay away from the rehab.

Educating carers about no off-label, pacing up, detailed diaries, or expecting natural gradual improvements. This causes so much strain on relationships when you’re perceived to be fighting against people that say they want to help. These people will not go away, and pwME/CFS need someone in their corner.

How to do feeding support at home, especially addressing the commonly cited infection risk. Someone to oversee nutritional needs.

If they have nurses helping at home: educating them about how to avoid causing PEM. In Norway, something like a third discontinued the services because they did more harm than good. The parents of the most severe spend 40+ hours/week caring for the patient.
 
V.R.T. said:
And we have a lot of people in very dire, life threatening situations who should not be left to die before a phase 3 occurs because they aren't lucky enough to have well off parents.
Click to expand...

Believe me, I am only too familiar with this situation and within a government funded system there are no easy answers - and probably rightly so. In an interim situation physicians can set up publishable studies, as I did. Using something like daratumumab is not simple. You have to know about plasma cells, otherwise you get the situation we got with rituximab with a mass of uninformed French physicians making the patients hypogammaglobulinaemic so that they got infections. Use of dara should probably be restricted to physicians with good understanding of immunology at least until a formal license is out and I would tend to argue, even after.
 
V.R.T. said:
Nobody here is, but we are not the people who will be providing services.
Click to expand...

But if the standard NHS system for expensive drugs applies, which it will, it doesn't really matter what those people think - they will not have access to drug.

I do agree that a good part of the motivation for restricting off-label usage is to ensure that potentially dangerous drugs with inadequate evidence base are not used under an NHS umbrella and that would include physicians allowing patients to pay for drug in the way that I did. But I strongly suspect that they cannot do that anyore. The bureaucratic octopus now has 256 tentacles.
 
I think there should be specialist nurses as the main point of contact for patients, providing a range of ways to communicate including online, phone and home visits. That way even the sickest patients and their carers should be able to get quick access to someone knowledgable who works directly with the consultant and can flag up problems hopefully before they become acute.

For example someone losing weight and having trouble eating should not be left alone to try to convince a GP they need help, and they should be able to get home based nutrition support quickly before it becomes life threatening.
 
Utsikt said:
Normal aids for ADL and mobility aids. Normal aids for personal hygiene when in bed. A good OT can do a lot if they stay away from the rehab.
Click to expand...

Can you be more specific? What aids would help with ADL? I can think of shower seats, shower conversions, wheelchairs, stair lifts? What aids are there for personal hygiene in bed?

I agree that a standard OT could provide these but my thought is that a nurse specialist almost certainly could too and an ME/CFS dedicated nurse is likely to be much better value than an ME/CFS dedicated OT.
Utsikt said:
Educating carers about no off-label, pacing up, detailed diaries, or expecting natural gradual improvements. This causes so much strain on relationships when you’re perceived to be fighting against people that say they want to help. These people will not go away, and pwME/CFS need someone in their corner.
Click to expand...

That is a useful list. I was thinking about being more specific about what therapeutic enthusiasms patients and carers need protecting from (diaries etc.).

Overseeing assisted nutrition is clearly in there and specific may be useful.
Utsikt said:
The parents of the most severe spend 40+ hours/week caring for the patient.
Click to expand...

Yes, this seems central but the question is how best to ease the burden. Some good suggestions.
 
You must log in or register to reply here.
Back
Top Bottom