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

[Utsikt]

From the BMA:

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

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.

 

[Felis Catus]

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.

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.

 

[Jonathan Edwards]

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

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.

 

[EndME]

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?

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?

 

[V.R.T.]

s such a list not completely unrealistic even if it is not unreasonable? What exactly is the goal?

Appeasement has got us precisely nowhere. Why should we not advocate for the kind of services we actually need?

 

[Jonathan Edwards]

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?

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]

Its nothing the charities haven't been doing for decades, leaving the severe with nothing and being unrepresented once again. Its nothing new, you get used to being too ill for anyone to care about your needs because its too difficult to do it properly.

 

[bobbler]

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.

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).

 

[bobbler]

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 it is badly managed and 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.

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.