ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and PCS (Post Covid) Services.
Herefordshire and Worcestershire Post Viral Fatigue Service..
To contact the Herefordshire and Worcestershire Post Viral Fatigue Service,
the Phone Number remains the same at Malvern Community Hospital - 01684 612671, the new email address is - [email protected].
Marina Townend, the Service Lead/Specialist Occupational Therapist of the Herefordshire & Worcestershire ME/Chronic Fatigue Syndrome and Post-Covid Syndrome Services, has again been in touch updating us with forthcoming changes to the NHS Worcestershire ME/CFS Specialist Services). Marina joined us on Wednesday, 9 April, at our afternoon café meeting, and explained that the following information was emailed to their patients last week, as a follow up to the previous mailing.
Herefordshire and Worcestershire Post Viral Fatigue Service..
To contact the Herefordshire and Worcestershire Post Viral Fatigue Service,
the Phone Number remains the same at Malvern Community Hospital - 01684 612671, the new email address is - [email protected].
Marina Townend, the Service Lead/Specialist Occupational Therapist of the Herefordshire & Worcestershire ME/Chronic Fatigue Syndrome and Post-Covid Syndrome Services, has again been in touch updating us with forthcoming changes to the NHS Worcestershire ME/CFS Specialist Services). Marina joined us on Wednesday, 9 April, at our afternoon café meeting, and explained that the following information was emailed to their patients last week, as a follow up to the previous mailing.
Good afternoon
Many thanks to everyone who completed the patient survey about the new model for the ME/CFS and PCS services. I am writing to share a summary of the feedback we received.
How you feel about the changes.
The perception of the changes seems mainly positive, with a small minority expressing concern that the change is financially motivated and that there will be less resources available for both patient groups. I want to reassure you that this is not the case. The commissioner in our Integrated Care Board recognises the impact that these conditions have on sufferers and has chosen to invest in this service at a time when many Trusts are closing LC services, and many have never commissioned an ME/CFS service.
Some people thought that the sharing of resources may be more efficient in an integrated service, with easier access and increased support. We believe and hope that this will be the case – although we do acknowledge that with the current pressure in the NHS, we may never have all the resources that we would ideally like!
Many people with ME/CFS felt encouraged that it will be easier for them to receive a diagnosis. Others noted the overlap between the conditions, and thought it would streamline the services and make it simpler for GP’s and referrers.
There were some concerns that the differences between the conditions might not be recognised or addressed. All diagnoses are coded, for monitoring and research purposes, and ME/CFS and LC each have different codes. We try to address each person as an individual rather than by their diagnosis - something that is especially important with these conditions as they can vary hugely between each person.
What you’d like to continue:
- 1:1 support
- Information groups
- Group support
- Employment support
- Support for carers/ loved ones
- Peer support
- We plan to continue with all these things in the new service, in the same or similar formats to now.
What else you’d like:
>Access to a wider MDT
We will have improved access to specialist medical care in the new service and will continue to build on this. We have recently employed a physiotherapist, who is due to start in April, and we are hoping to recruit a dietician. We will be able to refer all patients to the fast-track pathway for NHS Talking Therapies if counselling is required. You will also be able to see a specialist GP (hopefully in post by July).
>Better referral pathways for tests and other specialists
This is currently being discussed, as we recognise that the current system (where we have to go back to your GP to request tests, investigations and onward referrals) can be slow and work-heavy for colleagues in primary care.
>Raising awareness and education for GPs and other health professionals
Educational sessions will be planned when the new service is established. Some GP’s do not seem to be aware that there is specialist provision for ME/CFS/LC exist locally, so communication will be sent out to all practices about the new service, with details of what we offer and how to refer.
>Faster access to the service
We apologise that some people have had to wait a long time to be seen, for various reasons. The new service will be more streamlined, and our aim is for all new referrals to be assessed within 10 weeks. Due to staff sickness and vacancies, there is a waiting list already so we will not be able to achieve this immediately.
>On-going support for those who have the condition for a long time
We recognise that, although some people make a full recovery, many will experience long-term effects of ME/CFS and LC. Unfortunately, there is high demand for the service, and we are unable to support everyone within the service indefinitely. We will offer an on-line support group for people after discharge, with the hope of being able to expand to localised face-to-face meetings in future. We are also going to trial annual reviews for the more severely affected patients, recognising that many GP’s do not offer this, even though it is recommended in NICE guidelines for ME/CFS.
>More access to face-to-face appointments
Although much of our work is currently on-line, to help manage symptoms of fatigue, face-to-face appointments can be requested and are offered where clinically indicated. There is likely to be more capacity for this in the new service, with some clinics planned.
>Patient-led support
A new development in the combined service will be Participation Partners. These are people with lived experience, who will be trained and supported to help others. We hope that a Participation Partner will be present in all our groups, and may take a lead in developing options for peer support in future.
> A way to re-access the service
We have agreed with commissioners that patients have the option of self-referring directly to the service for 6 months after discharge. This bypasses the need to go via your GP, unless symptoms have changed significantly.
>Follow up after groups
In the new service, all patients will be offered a 1:1 review after completing attendance at the group sessions. This will allow us to review what has been helpful and is working well, as well as identifying areas where more support may be required and making a plan to address these.
The name of the new service
Responses to the suggestions made were very evenly spread. Having read all the comments, including other suggestions, it was decided that the new service will be called the Post Viral Fatigue Service. We appreciate this will not reflect everyone's experience of ME/CFS or LC (e.g. you may have ME/CFS without having had a virus) but the vast majority will fit into that description. The service is for everyone with ME/CFS and LC, whether or not symptoms followed a viral infection, and GP's will be aware of that.
Over the next few weeks, we will be gradually transitioning to the combined service but you shouldn't notice any significant changes to your care. We will continue to be based at Malvern Community Hospital, with the same phone number. We do have a new email address though: [email protected] Please use this for future correspondence.
We greatly appreciate your comments and suggestions, and will use them in our quest to improve the service going forwards. There will be on-going opportunities to provide feedback via Care Opinion (more information about this shortly!) so please keep in touch and let us know how you are finding things.
Kind regards
Marina
Marina Townend
Service Lead/ Specialist Occupational Therapist
Post Viral Fatigue service
Malvern Community Hospital | 185 Worcester Road | Malvern | WR14 1EX
Tel. 01684 612671
Many thanks to everyone who completed the patient survey about the new model for the ME/CFS and PCS services. I am writing to share a summary of the feedback we received.
How you feel about the changes.
The perception of the changes seems mainly positive, with a small minority expressing concern that the change is financially motivated and that there will be less resources available for both patient groups. I want to reassure you that this is not the case. The commissioner in our Integrated Care Board recognises the impact that these conditions have on sufferers and has chosen to invest in this service at a time when many Trusts are closing LC services, and many have never commissioned an ME/CFS service.
Some people thought that the sharing of resources may be more efficient in an integrated service, with easier access and increased support. We believe and hope that this will be the case – although we do acknowledge that with the current pressure in the NHS, we may never have all the resources that we would ideally like!
Many people with ME/CFS felt encouraged that it will be easier for them to receive a diagnosis. Others noted the overlap between the conditions, and thought it would streamline the services and make it simpler for GP’s and referrers.
There were some concerns that the differences between the conditions might not be recognised or addressed. All diagnoses are coded, for monitoring and research purposes, and ME/CFS and LC each have different codes. We try to address each person as an individual rather than by their diagnosis - something that is especially important with these conditions as they can vary hugely between each person.
What you’d like to continue:
- 1:1 support
- Information groups
- Group support
- Employment support
- Support for carers/ loved ones
- Peer support
- We plan to continue with all these things in the new service, in the same or similar formats to now.
What else you’d like:
>Access to a wider MDT
We will have improved access to specialist medical care in the new service and will continue to build on this. We have recently employed a physiotherapist, who is due to start in April, and we are hoping to recruit a dietician. We will be able to refer all patients to the fast-track pathway for NHS Talking Therapies if counselling is required. You will also be able to see a specialist GP (hopefully in post by July).
>Better referral pathways for tests and other specialists
This is currently being discussed, as we recognise that the current system (where we have to go back to your GP to request tests, investigations and onward referrals) can be slow and work-heavy for colleagues in primary care.
>Raising awareness and education for GPs and other health professionals
Educational sessions will be planned when the new service is established. Some GP’s do not seem to be aware that there is specialist provision for ME/CFS/LC exist locally, so communication will be sent out to all practices about the new service, with details of what we offer and how to refer.
>Faster access to the service
We apologise that some people have had to wait a long time to be seen, for various reasons. The new service will be more streamlined, and our aim is for all new referrals to be assessed within 10 weeks. Due to staff sickness and vacancies, there is a waiting list already so we will not be able to achieve this immediately.
>On-going support for those who have the condition for a long time
We recognise that, although some people make a full recovery, many will experience long-term effects of ME/CFS and LC. Unfortunately, there is high demand for the service, and we are unable to support everyone within the service indefinitely. We will offer an on-line support group for people after discharge, with the hope of being able to expand to localised face-to-face meetings in future. We are also going to trial annual reviews for the more severely affected patients, recognising that many GP’s do not offer this, even though it is recommended in NICE guidelines for ME/CFS.
>More access to face-to-face appointments
Although much of our work is currently on-line, to help manage symptoms of fatigue, face-to-face appointments can be requested and are offered where clinically indicated. There is likely to be more capacity for this in the new service, with some clinics planned.
>Patient-led support
A new development in the combined service will be Participation Partners. These are people with lived experience, who will be trained and supported to help others. We hope that a Participation Partner will be present in all our groups, and may take a lead in developing options for peer support in future.
> A way to re-access the service
We have agreed with commissioners that patients have the option of self-referring directly to the service for 6 months after discharge. This bypasses the need to go via your GP, unless symptoms have changed significantly.
>Follow up after groups
In the new service, all patients will be offered a 1:1 review after completing attendance at the group sessions. This will allow us to review what has been helpful and is working well, as well as identifying areas where more support may be required and making a plan to address these.
The name of the new service
Responses to the suggestions made were very evenly spread. Having read all the comments, including other suggestions, it was decided that the new service will be called the Post Viral Fatigue Service. We appreciate this will not reflect everyone's experience of ME/CFS or LC (e.g. you may have ME/CFS without having had a virus) but the vast majority will fit into that description. The service is for everyone with ME/CFS and LC, whether or not symptoms followed a viral infection, and GP's will be aware of that.
Over the next few weeks, we will be gradually transitioning to the combined service but you shouldn't notice any significant changes to your care. We will continue to be based at Malvern Community Hospital, with the same phone number. We do have a new email address though: [email protected] Please use this for future correspondence.
We greatly appreciate your comments and suggestions, and will use them in our quest to improve the service going forwards. There will be on-going opportunities to provide feedback via Care Opinion (more information about this shortly!) so please keep in touch and let us know how you are finding things.
Kind regards
Marina
Marina Townend
Service Lead/ Specialist Occupational Therapist
Post Viral Fatigue service
Malvern Community Hospital | 185 Worcester Road | Malvern | WR14 1EX
Tel. 01684 612671
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