Tender: NHS Kent and Medway Integrated Care Board Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long Covid service

Andy

Andy

Senior Member (Voting rights)
NHS Kent & Medway Integrated Care Board are undertaking a Provider Selection Regime (PSR) Competitive Process and are inviting suitably qualified and experienced providers to bid for a Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long Covid Service in Kent and Medway. The contract duration will be for an initial period of 3 years with an option to extend for up to a further 2 years as required.

To provide an integrated specialist service for adults (and transitioning young people) with suspected or diagnosed ME/CFS and/or Long Covid across Kent and Medway.

Key Features of the Service:
• Early diagnosis and personalised care planning
• Multidisciplinary team (MDT) approach including medical, nursing, AHPs, and care coordinators
• Virtual and in-person support options
• Integration with primary care, community services, and voluntary sector
• Support for self-management, rehabilitation, and return to work/education
• Dedicated pathways for severely affected patients, including home-based care
• Transition support for young people moving from paediatric to adult services

To provide full end to end pathway for patients with Long Covid & Chronic Fatigue. It includes diagnostics, treatment, rehabilitation and recovery support and delivery of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long Covid to meet the clinic specification in the recently revised national guide for post-COVID syndrome assessment clinics. To support serious debilitating conditions that can follow any type of viral infection. Both conditions have key symptoms in common and there may be similar level of functional impairment in in both. However, there are some important differences that distinguish some people with Long Covid from those with ME/CFS.

More detail
 
Well it’s full of buzzwords. I’d love to know what “treatment, rehabilitation and recovery support” they have evidence for.

Value excluding VAT: £9,500,000
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Enough to attract those wishing to expand their little rehabilitation empires but not enough to provide the support needed for people affected across an ICB which covers 2 million people and has a budget of around £4.7billion
2 million people and has a budget of around £4.7billion

Edit: using the Samms and Ponting prevalence estimates, that’s what, between 11 and 12 thousand people woth ME/CFS? With maybe 2-3k (as 20-25%) of them severely affected.

So 9.5 million across 3 years works out at about 267 quid per person per year if my sums are right.
 
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Andy said:
NHS Kent & Medway Integrated Care Board are undertaking a Provider Selection Regime (PSR) Competitive Process and are inviting suitably qualified and experienced providers to bid for a Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long Covid Service in Kent and Medway. The contract duration will be for an initial period of 3 years with an option to extend for up to a further 2 years as required.

To provide an integrated specialist service for adults (and transitioning young people) with suspected or diagnosed ME/CFS and/or Long Covid across Kent and Medway.

Key Features of the Service:
• Early diagnosis and personalised care planning
• Multidisciplinary team (MDT) approach including medical, nursing, AHPs, and care coordinators
• Virtual and in-person support options
• Integration with primary care, community services, and voluntary sector
• Support for self-management, rehabilitation, and return to work/education
• Dedicated pathways for severely affected patients, including home-based care
• Transition support for young people moving from paediatric to adult services

To provide full end to end pathway for patients with Long Covid & Chronic Fatigue. It includes diagnostics, treatment, rehabilitation and recovery support and delivery of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long Covid to meet the clinic specification in the recently revised national guide for post-COVID syndrome assessment clinics. To support serious debilitating conditions that can follow any type of viral infection. Both conditions have key symptoms in common and there may be similar level of functional impairment in in both. However, there are some important differences that distinguish some people with Long Covid from those with ME/CFS.

More detail
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Thanks Andy, some of the members of the ME group I belong to, live in Kent. I wonder if they can get any PPI involvement in selection or provide input for what a useful service would provide.
 
MEMarge said:
Thanks Andy, some of the members of the ME group I belong to, live in Kent. I wonder if they can get any PPI involvement in selection or provide input for what a useful service would provide.
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Given the contract notice is out, already has terms specified and this seems to have a closing date of 5 February 2026 I expect not. Sorry to sound negative on this but it doesn’t look to me as if they are seeking patient participation in defining what is needed here. Happy to be corrected if I’m misreading this.
 
Andy said:
Key Features of the Service:
• Early diagnosis and personalised care planning
• Multidisciplinary team (MDT) approach including medical, nursing, AHPs, and care coordinators
• Virtual and in-person support options
• Integration with primary care, community services, and voluntary sector
• Support for self-management, rehabilitation, and return to work/education
• Dedicated pathways for severely affected patients, including home-based care
• Transition support for young people moving from paediatric to adult services
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I think someone should tell Kent that this implies that rehabilitation is possible, i.e. that there are behavioural measures that can be taken to cause an improvement in health for pwME/CFS.
 
Not sure who it is that can even fill the roles really, there is no one with any expertise to be taking these jobs anyway. What remains in the NHS is all the CBT leading exercise lot and the rest went private and retired and they aren't going to be enticed back for "rehab" rewording. So all that can happen here is they hire a physiotherapist that does the same thing they have always done and it goes as badly as it always has.

The first issue is there is no one to hire, no one has these skills you can't just chuck out a job for a non existing specialism on which no one has received any training and expect something back.
 
Will the Sussex and Kent ME/CFS Society be involved in developing the new Kent and Medway ME/CFS Services? The so called patient group/charity claims to have 'helped set up' the Sussex NHS Services and to have 'worked with' the Kent and Medway Service Team and its Lead Dr Vegara-Williamson.

Probably the Sussex and Kent Society will be involved in the new services. As 'Key Features' of the proposed new Kent and Medway Service will include:
'Integration with primary care, community services, and voluntary sector'




Sussex/Kent ME/CFS Society 2022:

'NHS Specialist ME/CFS Services'

'We also work with Dr Vegara-Williamson and his experienced team of four at the Kent & Medway Service that we also assisted in establishing at a similar time.'





And this is the 'success' the Sussex Society Chair claimed for the NHS ME/CFS Services thus far:

2022: “As regards intervention and support, 92% of those people diagnosed will go onto attend a self-management course, with 94% of those people finding their ability to manage their symptoms and impact on function of ME/CFS has improved, and 100% feeling ‘satisfied’ or ‘very satisfied’ with the programme after returning their evaluation questionnaires.”



measussex.org.uk

NHS Specialist ME/CFS Services - Sussex & Kent ME/CFS Society

The NHS Sussex-wide CFS/ME Service that we helped set up in 2004/5 has dealt with well over 7,000 new referrals and is one of the best and busiest in the UK. The highly experienced staff of seven led by Specialist physician Dr Alan Stewart and Specialist OT Julie Meriwoode do a great job...
measussex.org.uk measussex.org.uk




.
 
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Trish said:
I suspect it will be the most inappropriate hospital department like psychiatry or rehabiltiation medicine which sees a chance of some easy money and provide an extremely minimal service run by therapists.
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are any of the services any good? I note £9.5m doesn't seem the worst funding level that I've seen, the spec lists severe and home visits (which makes me dread how wrong it could go, but note how if there was a medical specialism behind it and focusing on the severe-first so they can use that learning of what made people worse and how it looks when they are about to get worse to inform mild/moderate by eg having lifetime care that means urgent appointments if someone might be in a position where they could deteriorate significantly and getting swift adjustments, equipment etc into place really could make the differnce as to how much worse they get and how much their life gets buried by it)

and that someone has commented that they are in that area but go to UCLH - I don't know whether that dept is any good so I'm not suggesting that specifically but it did then strike in my mind that ... is there any reason at all why it couldn't be eg if there is a medic at a big teaching hospital training up a service they then can service contracts in other areas.

Certainly that way you start to have the expertise for seeing enough who are actually severe/very severe too and start getting something that is more consultant-led and training others up but also tapped into other departments as an ideal in other specialisms.

I'll admit the putting together with LC and the rehab and 'return to work' stuff makes me think of targets lumped over everyone including the staff for an illness where it is about long term outcomes getting wrecked by short-term callousness to push people to do more than is good for their health by providing them with no other alternatives ie coercion - and that being potentially even more of a problem in getting good medics involved if they are being lumbered with expectations that are out of order given the prognosis of the illness in a way I'm guessing someone running a dept for RA, lupus, MS might provide the letters for adjustments etc for employers but it could be a different kettle of fish being inferred here?
 
What Kent and Medway ME patients said about the previous ME/CFS Services:


Appendix6: Your experience of ME services - report by MEAction UK

YOUR EXPERIENCE OF ME SERVICES

Survey report by #MEAction UK

October2019

(Evidence to NICE for the NICE Guideline (2021)





Survey Responses from patients referred to the Kent/Medway ME/CFS Services:


'There are no m.e/cfs centres in Kent'


'This only deals with activity management, not measures to address the illness.'


'Since being signed off by the clinic in 2013 I have had no one see me regarding my CFS. Some GPS don't understand it, I've been told to do more, which makes me worse to read a book & go for a walk. But I now finally know how much to to & when I need rest.'



Kent Me/CFS Service Gillingham:

'When I was diagnosed with M.E. I was severe and bed bound for years, the consultants blamed me for being ill, they said it was growing pains or I was skiving off school, or I was depressed instead of educating themselves about my condition they turned the blame and responsibility to myself (then a child) and my mother.

I was told to exercise and to take sugar supplements or glucose powder, which had a detrimental affect on me and as a result of my treatment I was bed bound for around five years, lost all of my schooling which I loved and I have had a hellish life where I have been left alone with no treatment unable to work or care for myself properly.

I am still in a bad way 30 years later, barely unable to walk. These M.E. services are shocking, abusive and traumatic for patients. Further more many doctors add to the abuse and trauma as there seems to be a lack of education on M.E. and many doctors and consultants in hospitals are still working from the mindset that M.E. Is psychological.
With all the evidence and biomedical research that has been done we know that it is not.
Please, STOP harming patients. Stop putting children at risk and destroying their futures.'


'Since 2009 I have not received ANY informed expert advice or support with my ME and have encountered disbelief and hostility.'


'The most knowledgeable and understanding professional I have ever met in my 27 years of being ill is [professional].'



............................................................
 
hotblack said:
Given the contract notice is out, already has terms specified and this seems to have a closing date of 5 February 2026 I expect not. Sorry to sound negative on this but it doesn’t look to me as if they are seeking patient participation in defining what is needed here. Happy to be corrected if I’m misreading this.
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As you might expect, us Suffolk folk and the wonderful ME Local Network are appraised of this.......
It was highlighted and interrogated 9. 30 am.
Especially as having signed up to look at Spec and Pathway......
We find our own Suffolk drafts ( from 2025!)....

A new set of Commissioning officers and Delivery Officers for Kent Medway are driving this
It was to be just a new LC Service In 2022.
I suspect our work in Suffolk ICB has been 'shared' for Pathway and Specification .. .
MEA. RF?
 
Budget over 9 million for 5 years

The combined population of Kent (excluding Medway) and Medway is around 1.9 million, with Kent County Council's area having roughly 1.61 million (as of recent estimates) and Medway adding about 280,000 (2021 Census/2022 data), totaling over 1.89 million, making the broader Kent/Medway region a significant population center in Southeast England.

Suffolk population is much less
Budget 5.4 million over 5 years


The
NHS Suffolk and North East Essex Integrated Care Board (ICB) serves over one million people, encompassing Ipswich, east Suffolk, west Suffolk, and parts of north-east Essex, planning and buying healthcare for this population. While Suffolk County itself had around 760,000 residents in the 2021 Census, the ICB's total covered area is larger, with projections showing significant growth.
Key Figures
  • Total Population Served: Over 1 million.
  • Geographic Area: Includes Suffolk (Ipswich, East, West) and North East Essex (excluding Waveney).
  • Suffolk County (2021 Census): Approximately 760,688.
 
Lou B Lou said:
Will the Sussex and Kent ME/CFS Society be involved in developing the new Kent and Medway ME/CFS Services? The so called patient group/charity claims to have 'helped set up' the Sussex NHS Services and to have 'worked with' the Kent and Medway Service Team and its Lead Dr Vegara-Williamson.

Probably the Sussex and Kent Society will be involved in the new services. As 'Key Features' of the proposed new Kent and Medway Service will include:
'Integration with primary care, community services, and voluntary sector'




Sussex/Kent ME/CFS Society 2022:

'NHS Specialist ME/CFS Services'

'We also work with Dr Vegara-Williamson and his experienced team of four at the Kent & Medway Service that we also assisted in establishing at a similar time.'





And this is the 'success' the Sussex Society Chair claimed for the NHS ME/CFS Services thus far:

2022: “As regards intervention and support, 92% of those people diagnosed will go onto attend a self-management course, with 94% of those people finding their ability to manage their symptoms and impact on function of ME/CFS has improved, and 100% feeling ‘satisfied’ or ‘very satisfied’ with the programme after returning their evaluation questionnaires.”



measussex.org.uk

NHS Specialist ME/CFS Services - Sussex & Kent ME/CFS Society

The NHS Sussex-wide CFS/ME Service that we helped set up in 2004/5 has dealt with well over 7,000 new referrals and is one of the best and busiest in the UK. The highly experienced staff of seven led by Specialist physician Dr Alan Stewart and Specialist OT Julie Meriwoode do a great job...
measussex.org.uk measussex.org.uk




.
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Let's hope someone decent will bid ....
As people know. Not a lot of choice.
Maybe LSHTM might be interested...
 
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Suffolkres said:
Budget over 9 million for 5 years

The combined population of Kent (excluding Medway) and Medway is around 1.9 million, with Kent County Council's area having roughly 1.61 million (as of recent estimates) and Medway adding about 280,000 (2021 Census/2022 data), totaling over 1.89 million, making the broader Kent/Medway region a significant population center in Southeast England.

Suffolk population is much less
Budget 5.4 million over 5 years


The
NHS Suffolk and North East Essex Integrated Care Board (ICB) serves over one million people, encompassing Ipswich, east Suffolk, west Suffolk, and parts of north-east Essex, planning and buying healthcare for this population. While Suffolk County itself had around 760,000 residents in the 2021 Census, the ICB's total covered area is larger, with projections showing significant growth.
Key Figures
  • Total Population Served: Over 1 million.
  • Geographic Area: Includes Suffolk (Ipswich, East, West) and North East Essex (excluding Waveney).
  • Suffolk County (2021 Census): Approximately 760,688.
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As an approx guess would it be around 10,000 + people with me/cfs including that from long covid going by Ponting’s figure . If they were doing lifetime proper healthcare. 2,500 severe or very severe.

Although of course at any one point most wouldn’t want much just a check up every few years unless something changes. Is it a big enough very severe that proper medical protocols being avoided ‘because there will only be 4-5’ can no longer be justified or not?

Is there an equivalent illness population eg another illness we can compare funding for that popn size for?

But depending on where they decide to draw the line on who gets sent and what types of LC is covered then it becomes very different if they were looking at people just 4-6 weeks in with lung problems or loss of smell.

The summary above seems to focus it on the arm of LC that is more me/cfs like but I don’t know if there is other stuff that is long covid rehab that has nothing to do with me/cfs so to speak having to be run also . Even if it’s just people who have covid for 2months and it might turn into me/cfs what are the figures there and will that swallow all the budget on those who have LC/cf/pvfs type things over me/cfs being treated as the thing to make sure people who have that doesn’t get worse or will they be collateral damage (as the pace bacme stuff was about with their ‘anything but me/cfs’ ‘therapy’ that harms you if you have the thing funded but at least they fished out the ones who weren’t made so much worse whilst they did that).

Particularly if a spec suggests sorting the milder in large numbers that will recover anyway will produce better stats and be more rewarded vs offering what’s needed which is medically focused so focusing on rather than afterthought ing the illest.

Lots of questions about nuance of what could be hidden in here and if it really could all be down to choices of providers which bits of these they neglect or do based on budget and type of staff etc?
 
Suffolkres said:
Let's hope someone decent will bid ....
As people know. Not a lot of choice.
Maybe LSHTM might be interested...
Click to expand...

Involvement of Kent/Medway with the Sussex/Kent ME/CFS Society is not hopeful.

The Society is joined at the hip with BACME, with Alastair Miller as Medical Advisor - He was/is the frontperson for the public BPS hitback against NICE.

The current Sussex Services are all rehab, with 'Building Up Your Baseline'/Increased Activity as Treatment. And positioning Sleep as causing of all our health problems. Micro-managing sleep is big in the Sussex NHS ME/CFS Service. Along with getting Active by setting Goals.

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