Isle of Man radio interviews on new ME/CFS service

A new support service for people on the Island suffering from M.E., Chronic Fatigue Syndrome and Long Covid will extended to its full capacity from July. We reported on this in this blog earlier in the week.

Radio Manx has interviewed Health Minister Lawrie Hooper, Juan Corlett from ME Support Isle of Man and Russell Fleming from the UK Charity the ME Association. Below is a link to the audio of the interviews on the Radio Manx site and we show a full transcript of the interviews below.

Transcripts

Health Minister Lawrie Hooper gave an update in this month's sitting of Tynwald:

Thanks, care are developing an integrated and multidisciplinary me CFS and long COVID service that will be able to support clinicians across primary care to make an early diagnosis and appropriate referral to the specialist service, there will be delivered by trained staff to understand the condition who are able to undertake comprehensive assessment and initiate targeted interventions.

Health Minister Lawrie Hooper

The service is aimed to be non-judgmental, reviewing the patient's needs, and developing a plan of care with that patient and it will be a service that other services can learn from and understand how these conditions can impact on people's lives.

Health Minister Lawrie Hooper

The scope of the services to provide a consistent and integrated offer to the ME CFS and lung COVID population on the Isle of Man with some aspects of their care provided off island when specialist care or advice is required. Such, such as perhaps immunology. The service will include adults and children taking into consideration the feedback that was collated at the listening events held for both patient groups in February and March of this year.

Health Minister Lawrie Hooper

One of the deliverables of the service will be training for healthcare professionals who will be interacting with those living with these conditions. For example, nurses or social care workers, paramedics and hospital-based consultants. Other deliverables will include fully staffed specialties for the multidisciplinary team (MDT) service and agreed plan of care in place for each patient referred to the service. Leaflets and information for other services in various mediums to inform the wider public and a dedicated project team that includes all the expertise required to fully inform the requirements of the service.

Health Minister Lawrie Hooper

Mr President, to date Max Care is appointed a dedicated service development lead to take forward the project at Pace will work alongside full-time project clinician who will provide the clinical expertise to develop clinical pathways based on NICE guideline and nuanced to fit our circumstances and patient and service user feedback. This project clinician role will be a job share between our two existing specialist therapists who are both working with the ME/CFS or Long Covid patients.

Health Minister Lawrie Hooper

In addition, two patient information leaflets have been developed in house for patients who have suffered COVID-19 to provide advice as to how to manage any long-term effects of Covid such as ongoing smell or taste changes, breathlessness.

Second of these leaflets will be uploaded to the Long Covid website in the next week. Also close to completion is our communication strategy for the project, as well as a draught suite of job descriptions for professionals and support staff who will work in the new service.

Health Minister Lawrie Hooper

Finally, Mr. President, there is an open offer from ME Support, Isle of Man, to assist the training for government departments, and Manx care will be collaborating closely with the charity. to offer training to other government departments.

Supplementary Mrs Cane.

Thank you Mr President, thank the Minister for that detailed answer and could he clarify a couple of points.

Can he confirm the amount if Treasury funding has been secured to set up the service and when it will be operational for adults and children to access?

Health Minister Lawrie Hooper

Thank you very much, Mr. President. Yes, I can confirm Treasury funding was secured as part of the budget, it is included in the Pink Book.

Health Minister Lawrie Hooper

I can't remember, off the top of my head, the exact amount, but it was in the region of £400,000 I believe. In terms of when the service will be offered, the Long Covid service is currently up and running, patients can be referred into it. This is a further development and enhancement of that existing service and the implementation timeline for this enhanced service is from July of this year.

Juan Corlett, Charity ME Support Isle of Man

Our charity has already done their work to raise awareness, and particularly amongst the business community by running workshops which educate those in attendance about the basics of post-viral conditions and how they can be exacerbated and how they can be well managed.

You know those seconds have got material that would be equally relevant to other audiences. So, like might be in the wider community, it might be in a sports setting, it could be in schools and with Max cares assistance, we're hoping to roll out the initiative to a bigger audience.

And if anybody is interested in learning more, they can always contact our charity through info@mesupport.im or our Facebook page which is ME Support – IOM

Radio Presenter

You mentioned as well in this statement that Mr. Hooper's emphasis on prompt diagnosis showed how carefully he was listening. Just tell us how important a prompt diagnosis is.

Juan Corlett, Charity ME Support Isle of Man

Yeah, the importance of, you know, a detailed diagnostic assessment can't be, you know, underestimated because it's quite easy to misdiagnose with these types of conditions that are quite complex and there's different conditions that sometimes overlap. It's really important to know the condition that you're living with, so that you get the right advice and you manage it appropriately and it is of course really important to get that advice early as well so that you manage early on in the condition. And it's unfortunately the case that when you don't get good advice in the early stages that you can exacerbate the symptoms.

Radio Presenter

And we heard mention as well that the Long Covid service is up and running. There's supposed to be due to the enhancement of the existing service from July. Now we were expecting the full service at the end of December last year, but that didn't quite get round to it. So, will we see that final full service do you think by the summer?

Juan Corlett, Charity ME Support Isle of Man

So, it's hard for us to predict accurately, the timing of the enhanced service but Minister went on record as saying that they're planning to enhance the service between July and September of this year. And you know, if they can if they can commit to and meet those targets then you know that would be, you know something to be celebrated and we could finally see that appreciable change from the small service with insufficient resources to a to a well-equipped service which is fit for purpose.

Radio Presenter:

And you say that has the potential to set the gold standard, then, which would be of interest around the UK, yeah, and even further afield.

Juan Corlett, Charity ME Support Isle of Man

Yeah, I think the aspiration is that will create a high-quality service. We need to walk before we can run and you know we need to get the basics right first but unfortunately healthcare for ME and CFS patients has been inadequate internationally and the Long COVID response globally hasn't been brilliant either. So, if Manx care is able to keep its promises and create a service which is meeting its current ambitions, then there's no reason why you know we shouldn't celebrate that further afield and then, there may well be interest from other services in the UK or elsewhere in in learning from what we're doing here.

Radio Presenter

And just more generally, we heard Arbry Castletown Malou MHK Tim Glover asked the question just how many people are suffering with long Covid on the islands. Now the minister was slightly hesitant to answer, and said it was slightly outside of the scope of the question. But you estimate this service could improve the quality of life for hundreds of people on the Isle of Man?

Juan Corlett, Charity ME Support Isle of Man

Certainly well, it was already thought there were between 300 and 350 people living with ME before the pandemic and then the government own estimates from January put the number of people living with long COVID well over 1000. I think it was maybe even closer to 1500. So, that's sort that matches up with our personal experiences of speaking to people who are living with Long Covid over there, definitely a lot of people out there. Some are mild cases, some of them are able to work in some capacity alongside their condition, there's others who are very severely debilitated by long Covid and there is a lot of demand out there for this service, and when it's up and running, I don't think they'll be any shortage of people who will be able to benefit from the advice that will be giving out.

Russell Fleming is from the UK charity ME Association:

Well, first of all, I'd really like to praise, you know, the hard work from ME Support Island man and the patient volunteers. I don't think this new service would have got off the ground if they you know hadn't continued fighting for it, and we should also thank you, know the Manx government and the health service and those UK specialists who provided their assistance and advice for free.

Russell Fleming is from the UK charity ME Association:

It's been a real concerted efforts, patients, politicians and healthcare providers, and I think it serves as a gold standard for the rest of the UK really, because at the moment we're trying to implement the new NICE guideline, which is a much improved guideline and lays out recommendations about ME/CFS to NHS in England, Wales and Northern Ireland, and with Scotland, hopefully following suit.

Radio Presenter

What is the situation currently in the UK, then in terms of support for those with ME/CFS and Long Covid.

Russell Fleming is from the UK charity ME Association:

OK, so the support for Long Covid is has been boosted by the government in England and Wales providing 12 and a half million pounds. I think it was to establish a clinical network and so these are hospital based referral services where people with suspected or confirmed Long Covid can go be triaged and also then receive tailored management advice.

Russell Fleming is from the UK charity ME Association:

The ME/CFS specialist services in the UK there’s a network of hospital based services in England which has declined over recent years but there's very little support in Wales, Northern Ireland, and almost no support at all in Scotland. So, the 2021 NICE clinical guideline that was published last October, is hopefully going to change the situation for the better. We lobbied long and hard to get the new guideline in place that properly reflects the patient experience and recommends to GP's and specialist services how people with ME/CFS should best be managed.

We've now got that and for the next few years we're going to be working with the NHS to implement the recommendations, so that patients should see a vast improvement in the care they receive on the ground.

Radio Presenter

And you mentioned how before you described the Isle of Man services, as almost a gold standard. Do you expect this will cause some inspiration and when I was speaking with Juan from ME support yesterday, he described how he feels that we're step closer to ME being taken more seriously. Do you think that would be the case in the UK as well?

Russell Fleming is from the UK charity ME Association:

I do, I can tell you the Isle of Man development is already proving inspirational for both the NHS existing services in the UK and to commissioners who are looking to bring in new services in areas where we currently don't have any. I'd also say that a NICE guideline has gone a long way to remove any existing stigma about ME/CFS and Long Covid itself has had a significant impact in that area. You know, because of the vast numbers of people affected, and because COVID-19 and pandemic caused such widespread concern, you know, Long Covid hasn't attracted the same stigma that ME/CFS used to, and I would add that you can actually view both conditions as being sort of post viral fatigue syndromes.

Most of the people who have ME/CFS developed it after an infection and obviously people with long COVID developed it after the COVID infection, but there are very similar symptoms and the way people with both conditions should be managed. The kind of pacing and activity management that we recommend is similar to both.

Russell Fleming is from the UK charity ME Association:

But I think there's been vast improvements. You know, the media no longer talk about stigma, they no longer doubt the validity of people with ME/CFS. I think in the last 5 to 10 years there's been. Yeah, I mean things have turned around noticeably. I've just finally had that last week, ME Awareness Week we had a significant statement from Sajid Javid the Secretary for Health and Social Care here in the UK, which underscored the validity of MECFS and you know, promised more research funding and greater impetus to implement the NICE guideline.

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