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

[BrightCandle]

Should there be some option of self referral for specialist domiciliary care for people with severe ME/CFS whose GP refuses them care?

I think there is also badly a need for those severe patients who are being abused by their carers and family to have a place to go. The "Solarium" is a potential model here for quite a lot of house bound patients, but its going to need very strict monitoring to avoid patient abuse because as we know instutitional risks are very high. Hospitals are just the wrong place for this to all be driven from, they are the place you go when everything else failed for years and ultimately you are about to die.

 

[Eleanor]

Should there be some option of self referral for specialist domiciliary care for people with severe ME/CFS whose GP refuses them care?

Yes, to be a truly realistic service brief it has to acknowledge that there is a legacy of obstacles in the existing system, that these will take time to remove, and that patients need pathways to bypass them in the meantime.

 

[Jonathan Edwards]

Should there be some option of self referral for specialist domiciliary care for people with severe ME/CFS whose GP refuses them care?

I don't see any prospect of changing the rule that the GP is the doorkeeper to all services.

 

[Felis Catus]

I don't see any prospect of changing the rule that the GP is the doorkeeper to all services.

Is it a rule if (NHS) patients can self-refer to podiatry, physio, talking therapies, sexual health services?

 

[Jonathan Edwards]

Is it a rule if (NHS) patients can self-refer to podiatry, physio, talking therapies, sexual health services?

It is a rule for most things and people with ME/CFS will get nowhere trying to slip in with a bit of podiatry and physio. The problem is getting a service with domiciliary care, which is nearly impossible even if you see the GP!!

Most of those things are let through because they are ways of avoiding taking something seriously. Sexual health is different - the idea is to stop the germs spreading to others so best not put any barriers up for spreaders needing treatment.

 

[Robert 1973]

I also think there may a case for not proposing a service that has a different referral process to other NHS consultant services. After all, the point is that we want to be treated more like patients with other debilitating conditions.

Given the attitudes of some GPs,
I can see why it would be helpful if patients could self-refer, but I think the aim should be to improve GPs’ understanding rather than treating ME/CFS differently to other chronic conditions.

If the clinics we are proposing existed, I suspect many of the currently unhelpful GPs might be quite keen to off-load their patients on to them.

However, I am extremely sympathetic to anyone who has an unhelpful GP. If/when the sort of service we want exists, I wonder if it might be possible for one of the organisations to set up a service for online appointments with GPs who are willing to refer. Maybe there could be a voluntary charge, with the option for some people to donate more to cover the cost for those who can’t afford it.

I’m just thinking aloud but as we are a very long way from getting anything like the sort of service we want it is perhaps a moot point.

 

[Jonathan Edwards]

However, I am extremely sympathetic to anyone who has an unhelpful GP. If/when the sort of service we want exists, I wonder if it might be possible for one of the organisations to set up a service for online appointments with GPs who are willing to refer. Maybe there could be a voluntary charge, with the option for some people to donate more to cover the cost for those who can’t afford it.

I think the problem is budgets. You cannot get a referral from a GP who is not your budget holder.
It might be argued that the service being suggested would be too expensive but I would be interested to know how much money is being wasted on rehab set-ups of no value (or worse).

 

[Robert 1973]

Can you get a referral to an NHS consultant from a private GP?

 

[Jonathan Edwards]

Can you get a referral to an NHS consultant from a private GP?

I doubt it. They would not have a commissioning budget to foot the bill.

 

[Utsikt]

Numerous google search results make it clear that private GPs can make referrals to the NHS. Are they all wrong?

 

[Felis Catus]

I also think there may a case for not proposing a service that has a different referral process to other NHS consultant services. After all, the point is that we want to be treated more like patients with other debilitating conditions.

Given the attitudes of some GPs,
I can see why it would be helpful if patients could self-refer, but I think the aim should be to improve GPs’ understanding rather than treating ME/CFS differently to other chronic conditions.

If the clinics we are proposing existed, I suspect many of the currently unhelpful GPs might be quite keen to off-load their patients on to them.

I agree with you, and GP problems are not really a part of the core discussion about potential ME/CFS services.

I guess it's inevitable to talk about GPs when they're the ones who are supposed to refer us to the ME/CFS services and also provide care outside ME/CFS. If you have a kidney problem, you need an appointment with your GP except if you go to a private specialist who doesn't require referrals. Severe patients most likely need help at home and don't work, hence have fewer options where they can live, hence might be stuck with their GP surgery for good. There are other people who are unhappy with their GP surgery but have no other options in their area and would benefit from access to someone else.

My problem is how to get a GP who does home visits (because there are NHS GPs who do that) when the only surgery in my area refuses to do so. I don't know why, so I can't claim it's due to ME/CFS.

 

[Kitty]

Can you get a referral to an NHS consultant from a private GP?

I've heard of people getting referrals to private consultants for an initial assessment, who then put them onto their NHS list. It seems mostly to be people who urgently need joint replacement surgery, though. Where they have such severe pain that their employment's at risk, consultants doing both private and NHS work seem able to hurry things up quite significantly.

Doubt it would work like that for ME/CFS, though, even if we had consultants. A badly knackered knee is a problem that can often be solved or improved to 'good enough' in one shot, so people look at it differently.

 

[NelliePledge]

If there’s a spec for ME/CFS services that includes GP practices doing home visits to very/severe ME/cFS patients then there will be a basis for challenging any practices that refuse.

 

[Felis Catus]

I've heard of people getting referrals to private consultants for an initial assessment, who then put them onto their NHS list. It seems mostly to be people who urgently need joint replacement surgery, though. Where they have such severe pain that their employment's at risk, consultants doing both private and NHS work seem able to hurry things up quite significantly.

Doubt it would work like that for ME/CFS, though, even if we had consultants. A badly knackered knee is a problem that can often be solved or improved to 'good enough' in one shot, so people look at it differently.

I've heard of patients seeing a private cardiologist for POTS for an initial assessment, then through NHS for follow-ups.

 

[Jonathan Edwards]

Numerous google search results make it clear that private GPs can make referrals to the NHS. Are they all wrong?

They could refer to an NHS GP or to an emergency unit but I would be surprised if they could refer to a secondary elective service where you need a budget code.

Can you tell us more?

 

[Jonathan Edwards]

I've heard of patients seeing a private cardiologist for POTS for an initial assessment, then through NHS for follow-ups.

This used to happen a lot but my guess is that these days an approval has to be got from the budget holder at some point. Otherwise who would pay the bill? Every patient is charged for.

It may be that if the GP has referred to the private consultant the consultant just uses that as the authorisation for billing and most GPs may not object. For a cancer, acute cardiac or maybe urgent orthopaedic case that might be regarded as just common sense.

It would be nice if it could be used but I don't see it as a serious option or something to rely on.

 

[Nightsong]

BMA page on private GP referrals to the NHS:

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

 

[Jonathan Edwards]

BMA page on private GP referrals to the NHS:

That sets out what is allowed in professional medical terms but I wonder if it tells us anything about what is permitted in billing terms. I suspect it means that if the NHS budget holder (GP) is willing the referral can be processed as normal, but I think that is likely to be the sticking point.

 

[Jonathan Edwards]

Here where I live, some private GPs say they can't refer to NHS, some explicitly say on their website they can.

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.

 

[Jonathan Edwards]

I think the bottom line may be that whatever route you go you need to have a referral from a budget holder with whom you are registered as GP (nominally NHS or private or both). If a GP is not inclined to refer for ME/CFS because they think it is a waste of their budget then they may refuse to refer, whatever route.