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Our response to BACME’s National Services Survey

October 30, 2023

We are delighted to see the final copy of BACME’s National Services Survey.

As a charity, we remain forever grateful for the work of clinicians within the ME/CFS space; a space that remains misunderstood, underfunded, and left behind.

The report is comprehensive and features a great deal of detail that highlights the current provision of ME/CFS care and services across the country. An exercise such as this will always have its limitations and in this case only 63 organisations were invited to take part of which 65% responded. There are 162 ICBs/NHS Trusts in England many of whom will not have been invited to take part or did not provide a response. Though the survey overall is a great body of work it still will not contain the full picture of care within the country however, the data that is provided is of great assistance in understanding how we can focus our campaign efforts in the right places.

We are glad to see that 31 ICBs in their survey are commissioning specialist ME/CFS services. This indicates, however, that many more still need to replicate this to ensure all of 162 NHS Trusts/ICBs provide adequate specialist services across the country. It was concerning to see that the geographical spread of services remains patchy. This replicates what we found when conducting our recent FOI report and highlights a postcode lottery of care still exists. Where services do exist, they do not always match the need of the population served when comparing number of places with prevalence of M.E. This is particularly the case with the poor geographical spread of children and young people’s services. This does highlight the need for continued advocacy to ensure more services are commissioned as per the NICE Guideline. We will continue to push for this as a charity and look forward to working with BACME in this regard.

We remain concerned that there are only 12 specialist ME/CFS services identified who see children and young people this despite 42% of children and young people’s services seeing an increase in referrals as a result of Long Covid. Given the growing demand we would like to see tailored services across a wide geographic spread the meet the need of young people with M.E. and M.E.-like symptoms.

Since the 2018 survey the shift to online care within the NHS has increased dramatically as reflected in this year’s survey. This is a largely positive step for patient care however, it does not always compare to face-to-face interactions. There should be a clear call for patients to be given the choice as to how their care is administered and included in the discussions when this is set out in their personalised care plans.

Despite the ongoing challenges faced by all healthcare services owing to the knock-on effects of the pandemic we were pleased to see that 84% of services are still able to see patients within 18weeks which is only a 5% reduction from 2018. However, over half of services indicated that not all patients referred are seen in that timescale and some services are still reporting waiting times for some patients of up to 2 years. In addition, only 61% of services have a doctor as part of the ME/CFS with a further 21% of services able to access medical guidance from outside of the team. Though this does mean that 82% of patients using a service will have access to clinically-led advice, that still leave 18% without and we would like to see that gap closed. The survey has also alerted us to the fact that on 58% of services have doctors regularly attending multidisciplinary team meetings. This must grow as a way of showing that ME/CFS services are being taken seriously at the highest clinical level. A portion of this will be due to the well-documented staffing levels across the NHS. If the reported 53% staff vacancies across ME/CFS services could be filled then we believe the quality of timely care would increase. It was disappointing that the NHS Long Term Workforce Plan made no mention of ME/CFS care and we would like to see this addressed in any future updated publications.

We were pleased to see that the survey found that of the services questioned, 62% (23) were offering care and support plans as per the NICE Guideline. At Action for M.E., we are committed to working with partners to ensure everyone with M.E. has a personalised plan in place whether through a specialist service or through their GP so as to ensure no one falls through the gaps. The NICE Guideline is explicit in calling for this and we will continue to campaign for this to be implemented fully. We would also like to see those living with M.E. included in the planning of their care with health care professionals as they will be best placed to know what will work best for them.

BACME’s survey is welcome and like our FOI report it shows that there is a long way to go still before ME/CFS services are run in accordance with the NICE Guideline. We look forward to continuing to work with the brilliant clinicians represented by BACME to ensure that comprehensive and high-quality care is afforded to people living with ME/CFS.