UK - Discussion of how many patients use NHS ME/CFS clinics

[adambeyoncelowe]

Moderator note
This post has been copied from this thread and subsequent posts moved across.

I think it was the BACME response to NICE that said only 8,000 ME patients use the NHS clinics. That's only 3.2% of the estimated 250,000 ME patients nationwide (or 6.4% if the number was actually only 125,000, which is the lower estimate).

Either way, it seems like patients aren't using these services. It may also be that those who do use the services are those most likely to want to do CBT or GET. It also probably means we have GPs treating most patients, rather than specialist clinics.

So whether it's public or private healthcare, patients probably are voting with their feet.

 

[Jonathan Edwards]

I think it was the BACME response to NICE that said only 8,000 ME patients use the NHS clinics. That's only 3.2% of the estimated 250,000 ME patients nationwide (or 6.4% if the number was actually only 125,000, which is the lower estimate).

You may have to factor in time period. If on average the total length of illness is 20 years and people make use of services for one course of 'treatment' then you have to multiply those figures by 20.

 

[adambeyoncelowe]

You may have to factor in time period. If on average the total length of illness is 20 years and people make use of services for one course of 'treatment' then you have to multiply those figures by 20.

Yes, I wasn't sure whether it was 8,000 per year or 8,000 total. That may be something we need to clarify (I'll look into it).

 

[adambeyoncelowe]

Yes, I wasn't sure whether it was 8,000 per year or 8,000 total. That may be something we need to clarify (I'll look into it).

Here's the BACME quote:

Current estimates suggest that around 8000 patients are seen in specialist services, so the majority of patients seen by health services are under GP care. Specialist service provision is unequal depending on geographical area and severity of disability

(emphasis mine)

Annoyingly, it doesn't say whether this is the lifetime total of patients or the annual number. The use of present tense is confusing. But given that they refer to this as a minority of patients, I don't think it can be 20 times this number (i.e, 64%).

 

[It's M.E. Linda]

Here's the BACMD quote:

(emphasis mine)

Annoyingly, it doesn't say whether this is the lifetime total of patients or the annual number. The use of present tense is confusing. But given that they refer to this as a minority of patients, I don't think it can be 20 times this number (i.e, 64%).

My immediately thought was the same as @Jonathan Edwards ie that U.K. folks get (excuse the horrid pun) referred for “CFS/ME treatment” once (if they are within easy distance of any unit, that is) ie 5 years ago for me.

I would agree therefore that the majority of people with ME are under GP care which, in most cases, means not a lot, unfortunately.

My GP is a lovely, supportive lady but I have not bothered her for past 14 months because.....well what can she do?

PS , off topic, appointment to give samples to UK ME/CFS Biobank in London tomorrow. All blood results will be shared with my GP surgery so I plan on an updating, information providing visit/phone appt within the next month.

 

[adambeyoncelowe]

My immediately thought was the same as @Jonathan Edwards ie that U.K. folks get (excuse the horrid pun) referred for “CFS/ME treatment” once (if they are within easy distance of any unit, that is) ie 5 years ago for me.

I would agree therefore that the majority of people with ME are under GP care which, in most cases, means not a lot, unfortunately.

My GP is a lovely, supportive lady but I have not bothered her for past 14 months because.....well what can she do?

PS , off topic, appointment to give samples to UK ME/CFS Biobank in London tomorrow. All blood results will be shared with my GP surgery so I plan on an updating, information providing visit/phone appt within the next month.

But then, is that 8,000 people a year or 8,000 people over a longer period of time? I wish they'd properly referenced this. It could just be an anecdotal number.

 

[MEMarge]

Do any of the NOD (National Outcomes Data) papers help?

https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-017-2437-3

 

[Dolphin]

It’s over 8000 adults use the services each year according to this paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3665909/ so many more would use them during their illness. And it’s questionable to use the 125,000 and 250,000 figures as not everyone is diagnosed.

I am not convinced that CBT/GET could dominate a system like they do in the UK in a country where patient preference had a bigger say which can happen if patients have to pay co-pays, partly from what I see in Ireland. The US isn’t the only country where a lot of people have private insurance; in the region of 50% have it in Ireland and healthcare costs aren’t as much as in the US.

 

[Russell Fleming]

But then, is that 8,000 people a year or 8,000 people over a longer period of time? I wish they'd properly referenced this. It could just be an anecdotal number.

In theory, probably not in practice, the NHS specialist services should be seeing newly diagnosed patients. Therefore perhaps we need to think incidence rather than prevalence?

However, in practice, I suspect the clinics also see people who have had a diagnosis for many years or who are rediagnosed/reviewed and happen to ask for a referral or who see a different GP who is aware of the referral system; or who change address to an area with a clinic...

Also, a factor, would be those clinics who can't do home visits and restrict the services they do provide to ambulatory patients i.e. mild/moderate and not severe. Some clinics - a limited number admittedly - do get out to severely affected people, but others do not: despite the NICE guideline recommendation.

Last I heard the figure of 9,000 referrals a year was mentioned, so I think we should think in terms of around 10,000 a year. I am not sure that the HOD is still functioning, or the extent to which BACME was ever in control of it for ME/CFS clinics.

On a personal note, I do recall querying the amount of paperwork I was asked to complete by one clinic I attended. I asked it it was sent to form part of the HOD research, and they said no it was only used internally, and that returns to BACME/HOD has ceased several years ago. That was back in 2010/11 I think.

We are also aware of the number of clinics and the network shrinking for several reasons. Money is the predominant factor I suspect, but this will also affect the number of referrals seen each year. So, maybe it is less than my 10,000, even less than 8,000 in England...

Not sure I've helped much LOL

Back to bed for me!

 

[adambeyoncelowe]

In theory, probably not in practice, the NHS specialist services should be seeing newly diagnosed patients. Therefore perhaps we need to think incidence rather than prevalence?

However, in practice, I suspect the clinics also see people who have had a diagnosis for many years or who are rediagnosed/reviewed and happen to ask for a referral or who see a different GP who is aware of the referral system; or who change address to an area with a clinic...

Also, a factor, would be those clinics who can't do home visits and restrict the services they do provide to ambulatory patients i.e. mild/moderate and not severe. Some clinics - a limited number admittedly - do get out to severely affected people, but others do not: despite the NICE guideline recommendation.

Last I heard the figure of 9,000 referrals a year was mentioned, so I think we should think in terms of around 10,000 a year. I am not sure that the HOD is still functioning, or the extent to which BACME was ever in control of it for ME/CFS clinics.

On a personal note, I do recall querying the amount of paperwork I was asked to complete by one clinic I attended. I asked it it was sent to form part of the HOD research, and they said no it was only used internally, and that returns to BACME/HOD has ceased several years ago. That was back in 2010/11 I think.

We are also aware of the number of clinics and the network shrinking for several reasons. Money is the predominant factor I suspect, but this will also affect the number of referrals seen each year. So, maybe it is less than my 10,000, even less than 8,000 in England...

Not sure I've helped much LOL

Back to bed for me!

Thanks. This is helpful. So I'm going to assume it's per year. That would make sense.

I think most people get diagnosed at specialist clinics. I wonder how long most stay on the books for?

 

[Suffolkres]

"However, in practice, I suspect the clinics also see people who have had a diagnosis for many years or who are rediagnosed/reviewed and happen to ask for a referral or who see a different GP who is aware of the referral system; or who change address to an area with a clinic..."
In our locality we have the stats for those re referrerals- A high % as the service does not provide ongoing care.

"Also, a factor, would be those clinics who can't do home visits and restrict the services they do provide to ambulatory patients i.e. mild/moderate and not severe. Some clinics - a limited number admittedly - do get out to severely affected people, but others do not: despite the NICE guideline recommendation."

Our persistence and complaints +pressure has resulted in the service now doing 15-20 domiciliary visits a month rather than 34 a year. Terry Mitchell in 2006 was seeing 20% of all referrals as domiciliary. The clinic focused on the severely affected and complex cases.

"Last I heard the figure of 9,000 referrals a year was mentioned, so I think we should think in terms of around 10,000 a year. I am not sure that the HOD is still functioning, or the extent to which BACME was ever in control of it for ME/CFS clinics".

Not the HOD but the NOD

Ceased in 2015 according to Dr Simon Collin who coordinated it at Bath for BACME- Dr SC has flown that nest....... to NHS England.....
The NOD was never fully signed up to rendering it meaningless....
Norfolk and Suffolk are running on 1600 "active patients" per annum atm- plus the new consultant service Suffolk in addition.

"On a personal note, I do recall querying the amount of paperwork I was asked to complete by one clinic I attended. I asked it it was sent to form part of the HOD research, and they said no it was only used internally, and that returns to BACME/HOD has ceased several years ago. That was back in 2010/11 I think.
BACME/NOD"

Patient questionnaire too much- a rethink requested

"We are also aware of the number of clinics and the network shrinking for several reasons. Money is the predominant factor I suspect, but this will also affect the number of referrals seen each year. So, maybe it is less than my 10,000, even less than 8,000 in England..."

If our clinic is running at 1600 plus Suffolk's....? ( both new, already diagnosed and referred on as the initial service has nothing new to offer....)

 

[Andy]

In our locality we have the stats for those re referrerals- A high % as the service does not provide ongoing care.

And those stats are?

Our persistence and complaints +pressure has resulted in the service now doing 15-20 domiciliary visits a month rather than 34 a year. Terry Mitchell in 2006 was seeing 20% of all referrals as domiciliary. The clinic focused on the severely affected and complex cases.

Who is Terry Mitchell? And how many referrals was 20%?

Ceased in 20115 according to Dr Simon Collin who coordinated it at Bath for BACME- Dr SC has flown that nest....... to NHS England.....
The NOD was never fully signed up to rendering it meaningless....
Norfolk and Suffolk are running on 1600 "active patients" per annum atm- plus the new consultant service Suffolk in addition.

2011 or 2015? And why should it need to be fully signed up to in order to make it mean something? For it to be fully accurate, now that would need all areas to sign up, less areas just means the accuracy, if trying to apply the figures collected countrywide, diminishes.

Patient questionnaire too much- a rethink requested

Do you mean you have requested a rethink? If so, by whom?

If our clinic is running at 1600 plus Suffolk's....? ( both new, already diagnosed and referred on as the initial service has nothing new to offer....)

Well, what area does your clinic cover, what population?

 

[NelliePledge]

Thanks. This is helpful. So I'm going to assume it's per year. That would make sense.

I think most people get diagnosed at specialist clinics. I wonder how long most stay on the books for?

I was referred January 2016 seen for assessment April 2016 group programme attended end August for 10 weeks, follow up session December 2016 (which I couldn’t go to). Discharged early 2017. So approx 12 months.

 

[Suffolkres]

And those stats are?

• The stats are released by the provider ( East Coast Community Health) to the Commissioning and Contacts team who copy us in- under out Terms of Reference, we are the Service Development and Implementation patient/carers on the Working Group overseen by Healthatch (allegedly).

Who is Terry Mitchell? And how many referrals was 20%?

• Dr. Terry Mitchell (consultant haematologist), now decease, set up one of the first ME Clinics in Suffolk 35 years ago. His service was used by the DoH in 2004 as a model for a national rollout.

• 20" of all referrals around that time (about 750, I think) were seen as home visits, domiciliary.

2011 or 2015?

• 2015 is was ceased.

And why should it need to be fully signed up to in order to make it mean something?

For it to be fully accurate, now that would need all areas to sign up, less areas just means the accuracy, if trying to apply the figures collected countrywide, diminishes.

• I agree. But it was "pumped up" by BACME EC etc to justify their research applications.

Do you mean you have requested a rethink? If so, by whom?

Service Development and Implementation patient/carers on the Working Group have after patients fed concerns and complaints to us.

Well, what area does your clinic cover, what population?

• Population covered by service is 2.5 million, and it's a large rural area predominantly making access to clinical services a problem.

 

[adambeyoncelowe]

It’s over 8000 adults use the services each year according to this paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3665909/ so many more would use them during their illness. And it’s questionable to use the 125,000 and 250,000 figures as not everyone is diagnosed.

I am not convinced that CBT/GET could dominate a system like they do in the UK in a country where patient preference had a bigger say which can happen if patients have to pay co-pays, partly from what I see in Ireland. The US isn’t the only country where a lot of people have private insurance; in the region of 50% have it in Ireland and healthcare costs aren’t as much as in the US.

Sorry, I missed this the first time around (the problem of raising tangents in another thread; the new thread helps). Thanks. This is good info to have.

So it looks like most people are being referred, diagnosed, given a course of treatment (or at least offered it) if they're mild to moderate, and then discharged back to GPs. That's what I would have suspected.

 

[Amw66]

As far as I know, Scotland has 3 locations for clinic type " support"

1 clinic in Western Isles (perhaps related to organophosphates?)
Integrated Care Centre, Glasgow (formerly homeopathic hospital - offers meditation etc)
Edinburgh - this is the clinic I think that @Emsho attended for GET

Fife have Keith Anderson, the specialist nurse who is seriously overstretched within his defined area
I'm not sure what the throughput would be for these services - the Scottish figure often quoted is c 20,000 affected ( I don't know where that comes from, but like the 250,000 it has been around for a long time)

There is a prevalence of support on East Coast ( Edinburgh and Fife in particular). Not much at all on West Coast- whether that is to do with incidence or where the seat of government is I don't know

 

[wdb]

Presumably 8000 referrals does not necessarily mean 8000 new ME/CFS cases, some could be pre-diagnosis or misdiagnosed and might be given a different diagnosis, some might be 'oxford criteria' CFS cases, it may only be a small portion are CCC/ICC ME cases.

 

[Russell Fleming]

I think NICE are pretty clear that primary care (i.e. GPs) should be capable of diagnosing ME/CFS and that referral is really for help in learning to manage the condition [insert preferred alternate terminology] etc. and for a second opinion.

However, NICE also recommend specific referral timelines (i.e. refer within so many weeks of diagnosis) and I believe - don't have time to check I am afraid - it is an immediate referral for anyone severely affected.

Unfortunately, or fortunately depending on your point of view and personal experience, the majority of specialist clinics do not visit people at home. So, there's little offered to the severely ill. And there is now no in-patient facility offered anywhere in England - or so I understand and can remember.

We don't really know how many people are diagnosed in primary care by GPs. Or what % of all those diagnosed actually are referred to specialist clinics in England. Or in what year post-diagnosis they are referred. Or whether they can/are re-referred if they relapse or fancy another crack at the support offered.

What we have is a survey published based on data collected between 2008-2010 that looked at whether people had equal access to specialist services. The paper was published in 2012 and said "Clinic activity data were obtained from 93.9% (46/49) of clinical teams in England which between them received referrals from 84.9% (129/152) of PCTs. 12 PCTs, covering a population of 2.08 million adults, provided no specialist CFS/ME service."

PCTs being Primary Care Trusts. I get muddled by PCTs and GPs - does one encapsulate the other or does PCT refer only to hospitals? Now of course we have CCGs (Clinical Commissioning Groups) who hold sway over spending on clinical services and GPs. Quite confusing really.

Edited to add: second opinion top paragraph

 

[Trish]

PCTs being Primary Care Trusts. I get muddled by PCTs and GPs - does one encapsulate the other or does PCT refer only to hospitals? Now of course we have CCGs (Clinical Commissioning Groups) who hold sway over spending on clinical services and GPs. Quite confusing really.

From this NHS site

CCGs replaced primary care trusts (PCTs) on April 1 2013. CCGs are clinically led statutory NHS bodies responsible for the planning and commissioning of healthcare services for their local area. CCG members include GPs and other clinicians, such as nurses and consultants.

 

[It's M.E. Linda]

I think most people get diagnosed at specialist clinics. I wonder how long most stay on the books for?

I would agree with @NelliePledge . About 13 months start to finish.

Referred to a satellite clinic of Bristol CFS/ME Service Dec 2013. First consultation Jan 2014.

One to one appointments agreed, to try to see if I could get back to work and to also support me through ongoing Occupational Health appts. The time in between appointments grew, as you went through the process.

It should have been 8 appointments in all, but they had discretion to extend this and I had 10, only because she was continuing to support me through Formal Review meetings at work and then wanted to see me for a final review after my dismissal from work (Dec 2014). She was very surprised (and pleased) that I didn’t suffer a relapse following some of the stressful meetings that I had at work.

Although CBT/GET language used, the therapist I saw was very sympathetic and assisted with necessary letters for Occupational Health, my (former) employer and her letters were eventually used as evidence for the DWP, but that’s another whole story.