Report calls for collaboration between faith groups and the health system
Faith groups can be part of the solution to the healthcare crisis in this country, according to the report Creating a Neighbourhood Health Service. The report contains impressive examples of local faith communities offering holistic solutions to non-medical needs. It has been jointly published by the ChurchWorks Commission and Theos, the religion and society think tank.
Demand for GP appointments is currently overwhelming, yet one in five GP appointments is for a non-medical reason. ‘Social prescribing’, as it is known, plays a vital role in providing practical support for people who are struggling with loneliness, low-level mental health conditions, and financial issues.
Many healthcare settings already employ Social Prescribing Link Workers, and faith groups contribute significantly to local social prescribing networks, with their focus on community, relationship and holistic wellbeing. They can also play a foundational role in preventative healthcare by helping individuals to access the right support early on.
The report reveals a gap between those social prescribing link workers who are aware of activities run or supported by faith groups (85% of those surveyed), and those link workers who have referred anyone to a faith group in the last three months (30% of those surveyed). The report sets out a blueprint to close the gap and makes the case for further integration between faith groups and healthcare provision at a neighbourhood, place and systems level.
Almost half of the link workers surveyed said that they had discovered activities run or supported by faith groups through networking. More proactive networking is needed to improve knowledge sharing between faith groups and healthcare professionals.
Last year, Lord Darzi’s investigation of the performance of the NHS stressed the need to prioritise neighbourhood level care, prevent ill-health and tackle health inequalities. Health Secretary Wes Streeting has outlined his vision of ‘a revolution of prevention’ and a ‘Neighbourhood Health Service’.
Creating a Neighbourhood Health Service calls for the contribution of faith groups to be fully recognised, and for proactive collaboration between faith communities, the voluntary sector, and the NHS. The impact of social prescribing can be seen through initiatives such as Warm Welcome, which provides 4,000 safe community spaces across the UK. Many of them are attached to places of worship.
The Rt Revd and Rt Hon Dame Sarah Mullally DBE, Bishop of London, has written the foreword to the report and says: “Seventy-five years on from the birth of the NHS, the next few years are some of the most pivotal to its survival. In the face of persistent and growing inequalities in health outcomes, and inequitable access to care, this report sets out the prescription for the health inequalities that are pervading so many communities. Indeed, it's a solution that already exists. Social prescribing utilising existing community structures can be transformative in offering affordable, effective care to millions of people. Faith groups in particular have an essential role to play here, and indeed many are already doing just that. I pray that further work can be undertaken exploring the opportunity here, and that it brings us closer to more interconnected, resilient, and healthy communities.”
Dr Marianne Rozario, senior researcher and projects lead at Theos, says: “There can often be a disconnect between health and faith. Yet, as we have set out in this report, linking faith groups into healthcare through social prescribing can improve the wellbeing of individuals. Therefore, relationship-building between faith and health at the level of ‘neighbourhoods’, ‘places’ and ‘systems’ is essential.”
Charlotte Osborn-Forde, CEO at the National Academy of Social Prescribing, says: “There is now robust evidence that social prescribing is an impactful, inclusive and cost effective approach, and it should play a significant role in delivering the government's aims for greater preventative and community-based healthcare. There are valuable and untapped assets in communities across the UK which should be better connected to the health system, and social prescribing should be available in every clinical NHS pathway to enable this. This report provides direction for how we can connect the great community work of faith groups into our health service in order to promote the wellbeing of local communities.”
The report is available on the ChurchWorks website here and is being launched at an online event on Thursday 30 January.
Having had MS for 20 years now I by pass primary care if I need support. I’ve just moved from Hertfordshire to Sussex and along with 2 other chronic conditions that I have the answer to transferring care has been the specialist nurses They have unlocked the tortuous administrative organisation that is the NHS. The NHS really is the umbrella term for individual units that don’t work together and the transfer has required tenacity and project management skills on my part to make it happen. I’m the kind of person who will self refer and self advocate so your ideas are good - but what happens for those who can’t?
It's exciting to think about how AI can help with symptom and relapse monitoring and management.
Apart from my annual check up and my treatment, I mostly want support for how to interpret and manage fluctuations in symptoms. I don't want to always be on the phone to my MS nurse because I know how stretched they are. So I just get on with it and never really feel on top of what's happening with my health and MS. Even when I have potential relapse awareness of how busy they are holds me back from seeking the level of support I really want and need.
I'm a well informed and highly engaged patient but over time the lack of capacity for engagement beyond very significant symptom shifts has worn down my own resolve to proactively manage my MS.
Can advances in wearable biomarker diagnostic/prognostics be paired with rapid AI-supported data analysis software, to provide realtime health insights specific to MS that will help us manage our symptoms, while also making the date available to our MS teams for analysis as needed, to free up doctors/nurses time for the moments when human interaction matters more?
It'll require upstream R&D investment but would thereafter likely be very cost effective.
The NHS fails in joined up holistic thinking. We may have MS a long with other conditions. A part from my GP care I find it so frustrating having to explain the impact of one thing on another. Dealing with 111 for instance. I recently had an asthma attack. Brought on by a chest infection. I sat it out through the early hours using my inhaler, until I got to see the Practice Nurse for Steroids and penicillin in the morning. Was I scared ? Yes, very. I was even more scared of going into hospital, I know I ought to have called for help but can’t help feeling I’ll get another bug in hospital whilst waiting. It was a long 3 hours using inhaler and dosing but I felt safer at home.
When I called the GPs there was a message about wearing masks in the surgery if you have any cold/ respiratory symptoms or been in contact with. When I arrived, double masked, out of 20 people, about 15 close together, only myself and one other had a mask. The nurse always wears one. I find public attitude towards self help really demoralising. We all know the mess of the NHS. We all moan, but until each person values the service, and stops wasting unattended appointments too, I can’t see how change will happen. It takes all of us.
I don’t know why people are so adverse. I know some people feel it’s their right to choose. I do not understand why it’s so inconvenient. I realise some folk feel trapped or have an irritation. I think most people can deal with it. We have such high numbers of Flu, chest viruses and Noro virus you’d think that people would like to avoid it. It also would reduce NHS burden.
I fully endorse the idea of self-management and self-referral to different HCP/clinics, as necessary. I also think an app that utilises AI could help answer questions people living with MS have and lessen the load on MS professionals in general, would be very helpful. I appreciate not everyone is able to read or engage with technology, but it's certainly something to consider for those of us who are able and willing. I also think the idea of pwMS becoming health champions (a form of peer support) would be excellent. Admittedly, as you identify Prof G, it would take time to train these people but perhaps this could be something organisations such as the MS Society, MS Trust, MS-UK, MS Revive etc could work towards collectively?
I do feel incredibly sorry for HCPs working in the NHS at the moment. It is hard enough being a patient using this priceless health service, let alone working under such exceptionally difficult circumstances.
PPE. The NHS has to take responsibility for the care of the staff and patients. This would result in less weight placed across all services for both patients and staff, especially neurology visits as a result of worsening disease, related cognitive issues. The more times an MS patient contracts a preventable communicable disease, the higher the chance of cognitive decline. Especially with something like covid which has been shown to bring on dementia, cognitive impairment and rare cancers.
I like the QR code - find additional information here handout for patients and their minders (prefer that term to carers).
I do think that more self-management would work well for me and accept that there are areas that I’m not an expert in and would benefit from educational resources. What does annoy me no end is the expectation that I educate HCP about MS! While I can understand that people in crisis mode could easily let keeping current on new developments, in areas that may not be the main focus of their practice, slip…. I find it particularly galling when my husband and “Dr. Google” find a solution to a problem I’d been suffering with for a decade. It took my husband 5 minutes, by the way. Solution was the top hit on the MS Trust’s website for addressing the symptom in pwMS. And it was not a new treatment by any means.
Self-referrals to HCP other than neurology are a great idea. I think it could be very effective if pwMS could be provided with a checklist to frame their conversations with HCPs. A you-are-going-to-see-the-incontinence-clinic list. A you-are-going-to-see-occupational-therapy list. That sort of thing. It would allow pwMS and their minders to prepare for the appointment and with luck make it both more efficient and effective.
I also think technology could be made better use of but that is a discussion for another time.
Thank you for all that you do for pwMS and your efforts to make the system better for all involved. X
What I have found incredible is that any contact I have with my MS nurse is not sent to my NHS app . So getting any evidence from her for my blue badge renewal has been tortuous . The Dept of Transport needs new evidence of conditions every time you renew badge so obvs no recognition from dept of transport that NHS is in crisis and won’t appreciate extra work .
Just thinking around this , I used to work in the general area of enhancement of teaching and learning in higher education and was much taken by a model outlined by a Dr John Cowan ( now deceased I think) who talked of Teaching and Learning (T&L) as a partnership between the student and lecturer. A partnership in which at the start of the degree course the lecturer is the lead and ‘expert’ whose task is to provide knowledge etc but importantly, to enable learning such that by the end of the degree it’s a much more equal partnership. I do think that, particularly with so much information easily available and in the context of AI the health care sector might benefit from exploring and adopting such a model i.e as treatment of a patient being a partnership between ‘patient’ and HCP.
Setting aside time and money constraints, and accepting that as in education some people will need more of a supportive partnership than others, here are some of my general and not thought through musings/ meandering around what a partnership model might look like in the case of MS.
When I was first diagnosed the MS Nurses ran a series of talks for newly diagnosed folk. The talks were on different aspects of MS and on services available and included guest speakers and perhaps importantly, 2 people with MS. We also had a visit to a local MS support centre. It’s some 18 years ago so I now can’t remember the details but I think there were something like 8-10 sessions over a couple of months, maybe less.
In effect this was our introduction to living with MS. It’s a shame but I think constraints on time and money saw the end of such ‘courses’ but I’ve always thought that its would be useful to have e.g annual or two yearly such events on latest advances and treatments including, very importantly, how best to learn more, to look after yourself, where to get more info along with e.g setting up something like this site or the MS Society Forum where that particular ‘cohort’ folk with MS can share and discuss what they have learned, tips etc.
Similarly our regular ‘appointments/ sessions with MS nurses or if you are lucky with your neurologist could adopt more of a tutorial’ type approach. Yes the nurse /neurologist needs to monitor and record how you are getting on but it could/should also be an opportunity for discussion and perhaps even e.g the nurse to give the ‘patient’ some reading to do , pointers to websites etc. And maybe the neurologist could organise annual Zoom or similar conferences , with breakout sessions s for people at different stages of MS and talks
That’s about as far as I’ve got in my musings although I do think we should get rid of the term ‘patient’ - it harks back to the days when the Dr knew best and treated the condition, and the patient did what he/ she was told 🙂
Important topic and thoughts. I've been in few different health boards and MS teams. Annual appointments do occur which I am aware is not the case everywhere. When there are difficulties for someone with their MS, they are seen asap. I definitely think the resources you mention including the MS selfie type materials would be invaluable for patient learning between appointments. The health boards I've been under also engage in newly diagnosed days and living well with MS events with charities. This works well from feedback as it allows them to cover various topics that patients are keen to hear about (pain management, bowel/bladder). The MS team I am under also runs online courses such as fatigue management which are very good for those that need it. Use of technology for certain things seems sensible. Essentially these are introductions and then self-management strategies are shared and contacts for if more help is necessary are there too. Self-management tools and guidance seems sensible.
I come under Wigan for GP and general care and the Walton centre Liverpool for ms .I have self referred under Wigan for physio ,neuro physio ,early ot intervention , podiatry,and othotics all of which have and are very useful.I have bi lateral food drop and ms nurse helped me apply forFES on the NHSbut I had to go to Leeds to obtain device and need to go every few months to check it as it's too busy / long wait at the Walton centre .This is not good .MS nurses at the Walton centre are excellent and we can phone for advice.My GP does not understand MS she has never had an NS patient and I have ppms .PPMS patient like me feel neglected anyway due to lack of treatment.I like seeing consultant every year as I am newly diagnosed as GP missed symptoms for 8 years.More training for GPS in recognising neurological symptoms.This seems common.
I have to say I popped into the hospital this week for a blood test. There was someone else in the room having her blood test and a third woman I assumed was her daughter. But then a doctor came in and introduced himself to the third woman. When I left they were both standing in the corridor and he was shining a torch into her eyes.
So I saw "corridor care" with my own eyes. I thought it only happened in A&E.
I think this would be fantastic. We live with this disease for so long and a lot of things can be self-managed or directed to appropriate places to take the weight off of neurologists. I would suggest that the first two-three years of dealing with MS are very tough and additional supports are important there, whether through MS Society links or elsewhere.
Shift MS do a great MS buddy system aimed at supporting newly diagnosed people. I've only been a buddy to one person, we've stayed in touch as friends though I haven't managed to convince them to start medication. I also have an unofficial buddy who was introduced by a friend. They are a patient at the same hospital as me (following a private diagnosis and referral) so I was able to talk them through what to expect at their first NHS appointment and what medications they might be offered, and that they should start as soon as possible (time is brain!). They weren't sure but when we caught up later they said "the Dr said exactly what you said, this is the medication they recommended and I'm going to start it"
In my early days of MS i would've found the MS sefie handout very heplful👍👍. Allowing me to take my own time with an aspect of self control / choice regards handling decisions and requests at HCP appt's.
It was very difficult finding any info in pre search engine days. So, I imagine it will be very helpful to the newly diagnosed 👍. Confident that the info is from a reliable source.
It would be good if info / guidance for people living with, and managing progressive (perhaps advanced) MS, (where no DMT's are available) is also given a place.
In the USA, there are many different payers-insurance companies, different coverage types. I prefer that system. Employer Benefits to employees. Medicare for qualified elders and disabled. Medicaid for Poor people falling within poverty guidelines. Instead of Single Payer System, We have multiple payers. Promoters of single payer have not been successful. #1.
#2 Covid began the new era of telemedicine. Appointments take all of 15 minutes. I don’t have the effort to go to appointments to ask me “How are You this Year?” In person appointments take several hours and wear Me out. Develop a self assessment tool. Encourage journaling? Online?
I have about 6-8 Doctors. I want all of them to sit down, even online chat together and talk about Me. 5-10 minutes max.
Blood draws, infusions, PT, in an outpatient setting. Keep MS patients as far away from the Hospitals. Bugs! Privacy, less time away from work or home.
Elderly or People with long term care needs like Dementia-contract with a nursing home or home care nursing group.
Discharge pathways. More self sufficient people or those with supports could go home, probably gladly not to get puked on.
Discharge planning staff can comb the place for potential discharges. As a new nurse 40 years ago, we had nurse aides do vital signs, turn, clean, tend patients. An LPN licensed practical nurse (about 1 year training) gave meds and did treatments. The RN was supervisor, called Doctors and did IV’s, called families. Your Hospital Leadership needs to determine how to manage this load. This is clearly unsustainable. NHS would do well by doing the same exercise. Best Wishes. When every citizen is covered, Very expensive care can reduce everyone’s potential benefits.
Let’s fix zoom, Local clinics-with accessibility blood draws, urine samples, X-rays. Zoom access same day. Urgent care in every town.
All testing same day. Provide you with satellite access for zoom. Testing Before appointments. Ew..Medicare Advantage benefits the private insurance companies. I thought it was a good idea. I worked as a utilization review nurse for Kaiser Permanente HMO. Pretty good care depending on the employer’s contract with the insurance company. It’s all about the cost of Need, cost of Care billing minus contract discounts negotiated by providers.
Providers use discounts as write off. Premiums also take Risk into account. Risk of projected Billing. Medicare and Medicaid are even worse with unelected bureaucrats work in their pajamas. Like Him or not, our new president will cut some spending. I hope He improves rules and the outsourced crooks running DHS, CMS. You always have the right to appeal decisions if you can survive the paperwork. If I can ever help you untangle Medicare, holler. 😎
I would have found this very helpful when diagnosed. There is a big issue with the difference in care between different NHS trusts and between England/Wales and Scotland and NI. They can't even keep all your notes in one place and if you move a lot it gets lost. I can't even get a copy of everything to manage it myself. If I had multiple problems I do not trust that there is anyone but me that would be on top of it all. That is ok for now while I have the ability but I don't think a neurologist is necessarily the right person to manage full body issues. There maybe needs to be a new discipline of consultant who can manage multi system issues. They may be able to make links between conditions and drug interactions and their main job would be directing you to relevant specialists. GPs are no good for this as they are mostly locums and you never see the same one twice.
Apologies for not providing an example of anything helpful but that is because the most helpful support has come from charities supporting MS and not from the NHS from whom i get the bare minimum which is ok because I am motivated and able to find and understand resources such as yours.
How will you disseminate the information around all NHS Trusts?
Email:
Faith groups could help to fix the NHS crisis
Report calls for collaboration between faith groups and the health system
Faith groups can be part of the solution to the healthcare crisis in this country, according to the report Creating a Neighbourhood Health Service. The report contains impressive examples of local faith communities offering holistic solutions to non-medical needs. It has been jointly published by the ChurchWorks Commission and Theos, the religion and society think tank.
Demand for GP appointments is currently overwhelming, yet one in five GP appointments is for a non-medical reason. ‘Social prescribing’, as it is known, plays a vital role in providing practical support for people who are struggling with loneliness, low-level mental health conditions, and financial issues.
Many healthcare settings already employ Social Prescribing Link Workers, and faith groups contribute significantly to local social prescribing networks, with their focus on community, relationship and holistic wellbeing. They can also play a foundational role in preventative healthcare by helping individuals to access the right support early on.
The report reveals a gap between those social prescribing link workers who are aware of activities run or supported by faith groups (85% of those surveyed), and those link workers who have referred anyone to a faith group in the last three months (30% of those surveyed). The report sets out a blueprint to close the gap and makes the case for further integration between faith groups and healthcare provision at a neighbourhood, place and systems level.
Almost half of the link workers surveyed said that they had discovered activities run or supported by faith groups through networking. More proactive networking is needed to improve knowledge sharing between faith groups and healthcare professionals.
Last year, Lord Darzi’s investigation of the performance of the NHS stressed the need to prioritise neighbourhood level care, prevent ill-health and tackle health inequalities. Health Secretary Wes Streeting has outlined his vision of ‘a revolution of prevention’ and a ‘Neighbourhood Health Service’.
Creating a Neighbourhood Health Service calls for the contribution of faith groups to be fully recognised, and for proactive collaboration between faith communities, the voluntary sector, and the NHS. The impact of social prescribing can be seen through initiatives such as Warm Welcome, which provides 4,000 safe community spaces across the UK. Many of them are attached to places of worship.
The Rt Revd and Rt Hon Dame Sarah Mullally DBE, Bishop of London, has written the foreword to the report and says: “Seventy-five years on from the birth of the NHS, the next few years are some of the most pivotal to its survival. In the face of persistent and growing inequalities in health outcomes, and inequitable access to care, this report sets out the prescription for the health inequalities that are pervading so many communities. Indeed, it's a solution that already exists. Social prescribing utilising existing community structures can be transformative in offering affordable, effective care to millions of people. Faith groups in particular have an essential role to play here, and indeed many are already doing just that. I pray that further work can be undertaken exploring the opportunity here, and that it brings us closer to more interconnected, resilient, and healthy communities.”
Dr Marianne Rozario, senior researcher and projects lead at Theos, says: “There can often be a disconnect between health and faith. Yet, as we have set out in this report, linking faith groups into healthcare through social prescribing can improve the wellbeing of individuals. Therefore, relationship-building between faith and health at the level of ‘neighbourhoods’, ‘places’ and ‘systems’ is essential.”
Charlotte Osborn-Forde, CEO at the National Academy of Social Prescribing, says: “There is now robust evidence that social prescribing is an impactful, inclusive and cost effective approach, and it should play a significant role in delivering the government's aims for greater preventative and community-based healthcare. There are valuable and untapped assets in communities across the UK which should be better connected to the health system, and social prescribing should be available in every clinical NHS pathway to enable this. This report provides direction for how we can connect the great community work of faith groups into our health service in order to promote the wellbeing of local communities.”
The report is available on the ChurchWorks website here and is being launched at an online event on Thursday 30 January.
Click here to register for the event: https://www.churchworks.org.uk/event/faith-and-social-prescribing-launch-event
Having had MS for 20 years now I by pass primary care if I need support. I’ve just moved from Hertfordshire to Sussex and along with 2 other chronic conditions that I have the answer to transferring care has been the specialist nurses They have unlocked the tortuous administrative organisation that is the NHS. The NHS really is the umbrella term for individual units that don’t work together and the transfer has required tenacity and project management skills on my part to make it happen. I’m the kind of person who will self refer and self advocate so your ideas are good - but what happens for those who can’t?
Re: ".... but what happens for those who can’t?"
They are put on a high-risk register and managed synchronously, as we do now.
It's exciting to think about how AI can help with symptom and relapse monitoring and management.
Apart from my annual check up and my treatment, I mostly want support for how to interpret and manage fluctuations in symptoms. I don't want to always be on the phone to my MS nurse because I know how stretched they are. So I just get on with it and never really feel on top of what's happening with my health and MS. Even when I have potential relapse awareness of how busy they are holds me back from seeking the level of support I really want and need.
I'm a well informed and highly engaged patient but over time the lack of capacity for engagement beyond very significant symptom shifts has worn down my own resolve to proactively manage my MS.
Can advances in wearable biomarker diagnostic/prognostics be paired with rapid AI-supported data analysis software, to provide realtime health insights specific to MS that will help us manage our symptoms, while also making the date available to our MS teams for analysis as needed, to free up doctors/nurses time for the moments when human interaction matters more?
It'll require upstream R&D investment but would thereafter likely be very cost effective.
The NHS fails in joined up holistic thinking. We may have MS a long with other conditions. A part from my GP care I find it so frustrating having to explain the impact of one thing on another. Dealing with 111 for instance. I recently had an asthma attack. Brought on by a chest infection. I sat it out through the early hours using my inhaler, until I got to see the Practice Nurse for Steroids and penicillin in the morning. Was I scared ? Yes, very. I was even more scared of going into hospital, I know I ought to have called for help but can’t help feeling I’ll get another bug in hospital whilst waiting. It was a long 3 hours using inhaler and dosing but I felt safer at home.
When I called the GPs there was a message about wearing masks in the surgery if you have any cold/ respiratory symptoms or been in contact with. When I arrived, double masked, out of 20 people, about 15 close together, only myself and one other had a mask. The nurse always wears one. I find public attitude towards self help really demoralising. We all know the mess of the NHS. We all moan, but until each person values the service, and stops wasting unattended appointments too, I can’t see how change will happen. It takes all of us.
I don’t know why people are so adverse. I know some people feel it’s their right to choose. I do not understand why it’s so inconvenient. I realise some folk feel trapped or have an irritation. I think most people can deal with it. We have such high numbers of Flu, chest viruses and Noro virus you’d think that people would like to avoid it. It also would reduce NHS burden.
My reply is above Italian.
I fully endorse the idea of self-management and self-referral to different HCP/clinics, as necessary. I also think an app that utilises AI could help answer questions people living with MS have and lessen the load on MS professionals in general, would be very helpful. I appreciate not everyone is able to read or engage with technology, but it's certainly something to consider for those of us who are able and willing. I also think the idea of pwMS becoming health champions (a form of peer support) would be excellent. Admittedly, as you identify Prof G, it would take time to train these people but perhaps this could be something organisations such as the MS Society, MS Trust, MS-UK, MS Revive etc could work towards collectively?
I do feel incredibly sorry for HCPs working in the NHS at the moment. It is hard enough being a patient using this priceless health service, let alone working under such exceptionally difficult circumstances.
Take care.
PPE. The NHS has to take responsibility for the care of the staff and patients. This would result in less weight placed across all services for both patients and staff, especially neurology visits as a result of worsening disease, related cognitive issues. The more times an MS patient contracts a preventable communicable disease, the higher the chance of cognitive decline. Especially with something like covid which has been shown to bring on dementia, cognitive impairment and rare cancers.
I like the QR code - find additional information here handout for patients and their minders (prefer that term to carers).
I do think that more self-management would work well for me and accept that there are areas that I’m not an expert in and would benefit from educational resources. What does annoy me no end is the expectation that I educate HCP about MS! While I can understand that people in crisis mode could easily let keeping current on new developments, in areas that may not be the main focus of their practice, slip…. I find it particularly galling when my husband and “Dr. Google” find a solution to a problem I’d been suffering with for a decade. It took my husband 5 minutes, by the way. Solution was the top hit on the MS Trust’s website for addressing the symptom in pwMS. And it was not a new treatment by any means.
Self-referrals to HCP other than neurology are a great idea. I think it could be very effective if pwMS could be provided with a checklist to frame their conversations with HCPs. A you-are-going-to-see-the-incontinence-clinic list. A you-are-going-to-see-occupational-therapy list. That sort of thing. It would allow pwMS and their minders to prepare for the appointment and with luck make it both more efficient and effective.
I also think technology could be made better use of but that is a discussion for another time.
Thank you for all that you do for pwMS and your efforts to make the system better for all involved. X
What I have found incredible is that any contact I have with my MS nurse is not sent to my NHS app . So getting any evidence from her for my blue badge renewal has been tortuous . The Dept of Transport needs new evidence of conditions every time you renew badge so obvs no recognition from dept of transport that NHS is in crisis and won’t appreciate extra work .
Just thinking around this , I used to work in the general area of enhancement of teaching and learning in higher education and was much taken by a model outlined by a Dr John Cowan ( now deceased I think) who talked of Teaching and Learning (T&L) as a partnership between the student and lecturer. A partnership in which at the start of the degree course the lecturer is the lead and ‘expert’ whose task is to provide knowledge etc but importantly, to enable learning such that by the end of the degree it’s a much more equal partnership. I do think that, particularly with so much information easily available and in the context of AI the health care sector might benefit from exploring and adopting such a model i.e as treatment of a patient being a partnership between ‘patient’ and HCP.
Setting aside time and money constraints, and accepting that as in education some people will need more of a supportive partnership than others, here are some of my general and not thought through musings/ meandering around what a partnership model might look like in the case of MS.
When I was first diagnosed the MS Nurses ran a series of talks for newly diagnosed folk. The talks were on different aspects of MS and on services available and included guest speakers and perhaps importantly, 2 people with MS. We also had a visit to a local MS support centre. It’s some 18 years ago so I now can’t remember the details but I think there were something like 8-10 sessions over a couple of months, maybe less.
In effect this was our introduction to living with MS. It’s a shame but I think constraints on time and money saw the end of such ‘courses’ but I’ve always thought that its would be useful to have e.g annual or two yearly such events on latest advances and treatments including, very importantly, how best to learn more, to look after yourself, where to get more info along with e.g setting up something like this site or the MS Society Forum where that particular ‘cohort’ folk with MS can share and discuss what they have learned, tips etc.
Similarly our regular ‘appointments/ sessions with MS nurses or if you are lucky with your neurologist could adopt more of a tutorial’ type approach. Yes the nurse /neurologist needs to monitor and record how you are getting on but it could/should also be an opportunity for discussion and perhaps even e.g the nurse to give the ‘patient’ some reading to do , pointers to websites etc. And maybe the neurologist could organise annual Zoom or similar conferences , with breakout sessions s for people at different stages of MS and talks
That’s about as far as I’ve got in my musings although I do think we should get rid of the term ‘patient’ - it harks back to the days when the Dr knew best and treated the condition, and the patient did what he/ she was told 🙂
Important topic and thoughts. I've been in few different health boards and MS teams. Annual appointments do occur which I am aware is not the case everywhere. When there are difficulties for someone with their MS, they are seen asap. I definitely think the resources you mention including the MS selfie type materials would be invaluable for patient learning between appointments. The health boards I've been under also engage in newly diagnosed days and living well with MS events with charities. This works well from feedback as it allows them to cover various topics that patients are keen to hear about (pain management, bowel/bladder). The MS team I am under also runs online courses such as fatigue management which are very good for those that need it. Use of technology for certain things seems sensible. Essentially these are introductions and then self-management strategies are shared and contacts for if more help is necessary are there too. Self-management tools and guidance seems sensible.
I come under Wigan for GP and general care and the Walton centre Liverpool for ms .I have self referred under Wigan for physio ,neuro physio ,early ot intervention , podiatry,and othotics all of which have and are very useful.I have bi lateral food drop and ms nurse helped me apply forFES on the NHSbut I had to go to Leeds to obtain device and need to go every few months to check it as it's too busy / long wait at the Walton centre .This is not good .MS nurses at the Walton centre are excellent and we can phone for advice.My GP does not understand MS she has never had an NS patient and I have ppms .PPMS patient like me feel neglected anyway due to lack of treatment.I like seeing consultant every year as I am newly diagnosed as GP missed symptoms for 8 years.More training for GPS in recognising neurological symptoms.This seems common.
I have to say I popped into the hospital this week for a blood test. There was someone else in the room having her blood test and a third woman I assumed was her daughter. But then a doctor came in and introduced himself to the third woman. When I left they were both standing in the corridor and he was shining a torch into her eyes.
So I saw "corridor care" with my own eyes. I thought it only happened in A&E.
I'd be up for being a brain health champion.
I think this would be fantastic. We live with this disease for so long and a lot of things can be self-managed or directed to appropriate places to take the weight off of neurologists. I would suggest that the first two-three years of dealing with MS are very tough and additional supports are important there, whether through MS Society links or elsewhere.
Shift MS do a great MS buddy system aimed at supporting newly diagnosed people. I've only been a buddy to one person, we've stayed in touch as friends though I haven't managed to convince them to start medication. I also have an unofficial buddy who was introduced by a friend. They are a patient at the same hospital as me (following a private diagnosis and referral) so I was able to talk them through what to expect at their first NHS appointment and what medications they might be offered, and that they should start as soon as possible (time is brain!). They weren't sure but when we caught up later they said "the Dr said exactly what you said, this is the medication they recommended and I'm going to start it"
I volunteer through MS Canada to do the same thing. Support groups seem to be failing in person. Unfortunately.
In my early days of MS i would've found the MS sefie handout very heplful👍👍. Allowing me to take my own time with an aspect of self control / choice regards handling decisions and requests at HCP appt's.
It was very difficult finding any info in pre search engine days. So, I imagine it will be very helpful to the newly diagnosed 👍. Confident that the info is from a reliable source.
It would be good if info / guidance for people living with, and managing progressive (perhaps advanced) MS, (where no DMT's are available) is also given a place.
Possibly links to helpful home excercises. Etc.
In the USA, there are many different payers-insurance companies, different coverage types. I prefer that system. Employer Benefits to employees. Medicare for qualified elders and disabled. Medicaid for Poor people falling within poverty guidelines. Instead of Single Payer System, We have multiple payers. Promoters of single payer have not been successful. #1.
#2 Covid began the new era of telemedicine. Appointments take all of 15 minutes. I don’t have the effort to go to appointments to ask me “How are You this Year?” In person appointments take several hours and wear Me out. Develop a self assessment tool. Encourage journaling? Online?
I have about 6-8 Doctors. I want all of them to sit down, even online chat together and talk about Me. 5-10 minutes max.
Blood draws, infusions, PT, in an outpatient setting. Keep MS patients as far away from the Hospitals. Bugs! Privacy, less time away from work or home.
Elderly or People with long term care needs like Dementia-contract with a nursing home or home care nursing group.
Discharge pathways. More self sufficient people or those with supports could go home, probably gladly not to get puked on.
Discharge planning staff can comb the place for potential discharges. As a new nurse 40 years ago, we had nurse aides do vital signs, turn, clean, tend patients. An LPN licensed practical nurse (about 1 year training) gave meds and did treatments. The RN was supervisor, called Doctors and did IV’s, called families. Your Hospital Leadership needs to determine how to manage this load. This is clearly unsustainable. NHS would do well by doing the same exercise. Best Wishes. When every citizen is covered, Very expensive care can reduce everyone’s potential benefits.
Let’s fix zoom, Local clinics-with accessibility blood draws, urine samples, X-rays. Zoom access same day. Urgent care in every town.
All testing same day. Provide you with satellite access for zoom. Testing Before appointments. Ew..Medicare Advantage benefits the private insurance companies. I thought it was a good idea. I worked as a utilization review nurse for Kaiser Permanente HMO. Pretty good care depending on the employer’s contract with the insurance company. It’s all about the cost of Need, cost of Care billing minus contract discounts negotiated by providers.
Providers use discounts as write off. Premiums also take Risk into account. Risk of projected Billing. Medicare and Medicaid are even worse with unelected bureaucrats work in their pajamas. Like Him or not, our new president will cut some spending. I hope He improves rules and the outsourced crooks running DHS, CMS. You always have the right to appeal decisions if you can survive the paperwork. If I can ever help you untangle Medicare, holler. 😎
I would have found this very helpful when diagnosed. There is a big issue with the difference in care between different NHS trusts and between England/Wales and Scotland and NI. They can't even keep all your notes in one place and if you move a lot it gets lost. I can't even get a copy of everything to manage it myself. If I had multiple problems I do not trust that there is anyone but me that would be on top of it all. That is ok for now while I have the ability but I don't think a neurologist is necessarily the right person to manage full body issues. There maybe needs to be a new discipline of consultant who can manage multi system issues. They may be able to make links between conditions and drug interactions and their main job would be directing you to relevant specialists. GPs are no good for this as they are mostly locums and you never see the same one twice.
Apologies for not providing an example of anything helpful but that is because the most helpful support has come from charities supporting MS and not from the NHS from whom i get the bare minimum which is ok because I am motivated and able to find and understand resources such as yours.
How will you disseminate the information around all NHS Trusts?