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

From the BMA:
www.bma.org.uk

Private practice and GP contracts

Private practice is significantly restricted for GMS and PMS contractors. Find out more about those restrictions as well as information about private referrals and private prescribing.
www.bma.org.uk www.bma.org.uk

Private GP referrals to the NHS​

Section 8.2 of the Department of Health’s 'Guidance on NHS patients who wish to pay for additional private care' (2009) is still extant and was not altered by the Health and Social Care Act 2012.

The Department of Health clarified that "patients who have chosen to pay privately for an element of their care are entitled to receive NHS diagnostic tests free of charge as long as they are eligible. A referral by a private GP for an NHS diagnostic test should not be any different from an NHS GP referral".

Private GPs are free to refer their patients to the NHS in the same way as NHS GPs can refer their patients to the private sector.

The 1986 handbook 'Management of private practice in health service hospitals in England and Wales', which sets out the key principles that govern private practice in the NHS, clearly states:

"All fully registered general medical practitioners may refer patients to NHS hospitals irrespective of whether they are treating them under the NHS or privately."

This principle is also underpinned in paragraph four of the handbook: that patients wishing to be treated privately are entitled to the same NHS services as any other patient with the same clinical need. However, it should always remain clear whether the patient is receiving private or NHS care.
 
Jonathan Edwards said:
Interesting that the cited headline says private providers. I wonder if some private GPs are in fact also NHS budget holders. If they are part of a large subcontracting provider they might well be.

My GP will see me either as an NHS or a private patient. She has an NHS budget code for me, which presumably she can use in either situation.
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Sorry, I deleted that post because @Nightsong was quicker in providing a link.

For the sake of transparency, there was this bit from BMA, "General practice responsibility in responding to private healthcare":

Private providers making onward referrals to NHS provider​

Private providers can make referrals to NHS services, without referral back to the GP, provided the patient would be eligible for NHS referral. Any patients referred should be treated based on clinical need. Read NHS England guidance around consultant-to-consultant referrals within the NHS.
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Felis Catus said:
For the sake of transparency, there was this bit from BMA, "General practice responsibility in responding to private healthcare":
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I still wonder whether this has the implication it seems to have. It indicates what is allowed in professional terms but the caveats about 'eligible' and 'need' may mean that in practice an authorisation code is needed from a budget holder.

In theory I could refer myself to lots of NHS units as a physician charging myself for the privilege but in practice I always get asked for a letter from my GP.

The referral may be made but the service provision may depend on the budget holder deeming it to fall under 'clinical need'. I imagine that GPs both in NHS and private practice are wise to the implications.
 
Jonathan Edwards said:
I am minded that time is ticking by. Do forum members think that it would be appropriate to send the draft as it is (in first post) to the ForwardME working group interacting with DHSC?
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Is such a list not completely unrealistic even if it is not unreasonable? What exactly is the goal?

Is it sensible to ask for less than currently demanded in the hope of it being seen as more realistic or is it wiser to demand more in the hope that at least something comes across?
 
EndME said:
Is such a list not completely unrealistic even if it is not unreasonable? What exactly is the goal?

Is it sensible to ask for less than currently demanded in the hope of it being seen as more realistic or is it wiser to demand more in the hope that at least something comes across?
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It is almost certainly unrealistic, although even that i am not entirely sure of. Things may suddenly start changing. I am assuming that it is unrealistic to think that policy will shift directly to what is suggested but the current DHSC proposal is actually extremely vague - so vague that in fact it could probably allow the suggested format to be set up by a commissioning group. I think there is at least a chance that the DHSC will shift to a position where it is more explicitly allowed.

If not, the goal is to try to get everyone involved to have some appreciation of the absurdity of the current DHSC wording of a rehab-ish service for mild/moderate and forget the others. And moreover, to appreciate the absurdity of the rehab model. I think that provides a chance for getting a better result from any local negotiations that follow. In one sense the whole thing is a juggernaut. But, as Suffolkres has established, it is also a fabric of individuals, some of whom can make sensible decisions.

There is a lever, in that if, as the DHSC say, they will look again at severe services, they may realise that you cannot really do that without a different format.

At the moment we have very few physician-run services, but there are just a few. There might be more soon. Getting physicians with a hospital base rather than community trusts may be the biggest sticking point but I don't think that should be allowed to slide without making it clear that it is not the best answer.

This suggested proposal is not a demand, or even an ask, so much as a suggestion of what seems to make sense. This is only a 'consultation' process. I see no point in watering anything down. That is what has happened up until now and it has been a disaster.
 
BrightCandle said:
The service as described is useless to me, I am too severe to be travelling into hospitals as I have stated repeatedly. I also have an obstructive GP that refuses to refer me or diagnose me. It would not help me at all, infact it would entrench existing prejudiced treatment I am receiving and further isolate me as I would not be suitable for the existing pathway. I don't need support either I need medication for my symptoms and consequences of my disease, medications other diseases receive when they get these symptoms.

I am disconcerted I have had to repeat myself on this so many times and been dismissed and ignored. I think S4ME is driving a very dangerous direction here and one I want no part of. You are about to do immense harm.
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I'm keen to make sure that we get more detail on this, and understand if there is something that could work or what to be aware /warned of that need to be noted here regarding the reality for a lot of severer pwme and what is needed vs what catches there are to be wary of?

I agree on the medication side of things, which I know brings up a difficult discussion but.. anything that makes the difference between not surviving and a little bit longer is where you end up being once ill enough,

and one thing we often don't have is control to be able to change ourselves the situation we are in so 'advice' to us without someone else putting it in place in a way that follows our needs (ie at our direction about how/what would work) just ticks a box whilst leaving workload we can't do anyway, but normally with a system that is not making it as easy as it might for others (I don't know whether others experience what we do when trying to have said 'discussions') given things tend not to have adjustments regarding the way assessments or emails or chats are done and advocates that understand our disability are hen's teeth and anything less than that is an energy drain (yet people assume we just haven't tried).
 
Something going on in my mind is that to become a proper medical service one day it does need to first understand what happens when me/cfs is badly managed (which seems the wrong term to describe this due to ambiguity as I don't mean by the person themselves as they do the best they can but we get put in difficult situations where when being undermine by that and others that means 'the safest thing given all variables' and not 'what in an ideal world I'd do' eg sometimes the thing that hurts us is less exertion than asking for help or arguing with the person who will refuse to understand and having to do it anyway)

and [understanding what happens when it is badly managed] that involves the right people actually seeing and hearing with open ears those who are more severe. And one day the ongoing care that means they see those who are milder left in a difficult unsupported situation trying to keep a job end up more severe over the space of time.

So that idea of it becoming lifelong/ongoing and start with the most severe to gain understanding of the illness makes sense.

But .... those who have had this longer and been more ill and in a situation where they couldn't sidestep what is quite a scary aspect of what has come with the label + the system can't risk putting themselves near the crosshairs of said system any more than they already are unless someone can really both make that new thing truly safe and able to make them more safe and reassure them it is and will be on an ongoing basis.

Many who get more ill are likely to have situations that aren't necessarily caused by themselves but by the snowballing of the past situation and culture but gets labelled as things like 'complex' at best inferring that it might be them or they might be different and it makes their whole situation very unsafe to teams or individuals that want to use certain labels or have done so already. The power of what can be put down on paper etc. Which in itself creates a catch 22.

Holes have been dug for us that (even with help) are potentially designed that we can't get out of without a certain type of ... well I don't know what can sort those situations out but it isn't the person on their own being able to (in fact that might dig it deeper). So another worry is at least making sure that baggage (that is practical not how someone feels) is correctly understood and not carrying forward too.
 
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I am thinking of adding in as an opening paragraph to the detailed text section:

In broad terms, the suggestion is to return to the service model prior to 2003, often delivered by infection and immunity physicians, prior to the misguided introduction of a rehabilitation therapy model based on a discredited theory of deconditioning. As the BACME Guide to Therapy demonstrates, there are no evidenced-based therapies and, in effect, no therapies. The physician-led model allows long-term integrated care across all levels of severity, which a rehabilitation-based model does not address.
 
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This thread is too long for me to read, so I'm adding my few comments to the version in the opening post.
Maybe it's worth adding something about the fact that many pwME, particularly those housebound or bedridden, currently get no medical care at all.
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Suggested Referral Service Provision Format for ME/CFS

The following is a draft outline for a referral service format for ME/CFS in the UK based on current evidence relating to patient needs.

Key structural elements:

1. A service primarily managed and delivered by a hospital-based physician.
As is standard for other serious chronic disabling conditions such as MS, lupus, RA and MND.

3. Initial assessment in a clinic within an established specialty department such as neurology or rheumatology, with average waiting times ideally of ~ 2-4 weeks, with an option for domiciliary assessment for severe cases.

4. Regular follow-up by a physician, or where no significant medical change is expected, a nurse specialist, 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 appropriate by patient and health care professionals. Services should be clinic based, via online/telephone communication or domiciliary, as needed. Domiciliary care should include services provided for other seriously disabling diseases such as multiple sclerosis (sight and hearing aids, dentistry etc.). Something about role of GP for referral, symptomatic treatment, home visits if needed.

8. Provision of realistic but sympathetic advice on prognosis, and advice on self-management based on individual patient experience. Provision of advice and assistance in relation to education and employment needs. and care needs and disability benefit applications.

9. Provision of pharmacological symptomatic treatments. No provision of (off-label) pharmacological or non-pharmacological treatments claimed to treat the underlying disease without a reliable evidence base, unless as part of well-designed controlled trials.
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The extended explanation is good. I hope you will circulate this widely.
 
Trish said:
Provision of advice and assistance in relation to education and employment needs. and care needs and disability benefit applications.
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Is this beginning to stray outside what doctors usually do in other conditions?

As far as I'm aware they'd normally provide information about the condition and likely prognosis. Where a disabling condition can't be improved or is expected to be progressive, they might provide a letter that could be used in claims for ill-health retirement or disability benefits claims. I haven't come across situations where doctors offered employment advice or assistance much beyond that, though they can refer people to other NHS services such as occupational therapy.

It's possible there's some liaison about care needs, but as the budgets and responsibility lie with the local authority, doctors' involvement is usually limited. The exception is the NHS continuing care model, which seems very difficult to access (but might be the most appropriate option for very severe ME/CFS).
 
Jonathan Edwards said:
In broad terms, the suggestion is to return to the service model prior to 2003, often delivered by infection and immunity physicians, prior to the misguided introduction of a rehabilitation therapy model based on a discredited theory of deconditioning.
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I’m not aware of any services that were quite as we are proposing. I was referred to 3 different NHS consultants running hospital based ME/CFS services over a period of about 20 years. They were all far better than the current services on offer but none had domiciliary care or specialist nurses as far as I’m aware. 2 had inpatient facilities but not as described in the draft. All prescribed off-label etc.

I like the idea of saying that services have gone backwards but I think we need to emphasise that they have never been adequate (which I think the most of the consultants running the services would agree with) and we need much better.
 
Kitty said:
Is this beginning to stray outside what doctors usually do in other conditions?
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It used to be the case that some hospital services had attached social workers, though often their prime role was to facilitate discharge. I assume this is still the case.

Perhaps a red herring, but many years ago I went to meet the head social service training officer for a large city, in relation to communication issues and feeding in relation to adults and the elderly, who had previously been a hospital based social worker. She understood the support needs of adults with long term disability and I came out of the meeting with contracts for training for all staff working with adults with physical disability to be provided in part by their own service users and a draft funding bid for city wide training provision for all their staff working with older adults.
 
Robert 1973 said:
They were all far better than the current services on offer but none had domiciliary care or specialist nurses as far as I’m aware.
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I wonder if things have changed more recently? Both the rheumatology and lipoedema clinics I've attended have specialist nurses. In the rheumatology dept they run the flare clinics and the self-referral service (patients can request a consultant appointment in between regular reviews if their condition has worsened).

The nurses are thorough, good at listening, and the quality and extent of their note taking is an order of magnitude more accurate than consultants. There's usually several doctors on duty in the clinic, so if a nurse thinks someone needs a med they can't prescribe or a referral or scan they can't sign off, they can grab one between patients to get it done. Nurse appointment slots seem to run for as long as is needed.

I imagine any domiciliary services required would be arranged via the GP under the shared care scheme. Under this, the GP provides routine services like repeat prescriptions, phlebotomy, etc, but as the hospital is directing the care, they call the shots.
 
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