Last reply 4 weeks ago
What's your experience of MS services?

Apologies, this is a UK-focused post, but all perspectives welcome.

There is a well documented variance in MS services from one area of the UK to the next. The UK MS Society has referred to this as a postcode lottery. What are your experiences? Do you feel lucky to be under the care of your MS centre, or would things be improved if you lived elsewhere?

This variance might be relating to access to DMTs, or access to specialist healthcare professionals such as psychologists, dieticians or OTs. It may also relate to the speed in which you’re seen when you experience new symptoms. Or it could be about the level of support people with progressive MS receive.

Do you feel you have had access to the full range of DMTs and services when you needed them? If not, please do share your experiences.

Do you have any ideas or suggestions of how the variance in MS care in the UK could be reduced?

Are there examples from other countries we can learn from to standardise care across the UK? Any suggested solutions very much appreciated.

I am attending a meeting in a couple of weeks – https://multiplesclerosisacademy.org/wp-content/uploads/sites/3/2018/10/MS-Service-Provision-in-the-UK-the-Way-Forward-draft-5.pdf – any insights you could share would be greatly appreciated.

Thanks for your help,
George

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vixen
1 month ago

Hello @gpeps, this is something I feel really strongly about. My sister and I live in London and were pretty much diagnosed at the same time nearly 2 years ago. I have RRMS and she has PPMS. My care has been excellent. I have an MS nurse who of course has direct access to my neuro. My sister, however, doesn’t have an MS nurse as her local authority don’t provide this service. Almost from the outset, she was left to her own devices and rarely has any approintments. She has severe foot drop. Through Shift, which I use everyday, I found out about a FES machine and sought ideas via posting. I think @stumbler posted a link to where FES services are located. She contacted a centre, got fitted up (although had to pay privately) and is now essentially walking again and able to get around. I can’t deny that I feel angry about the fact that, had I not been on Shift all the time, we might not have discovered that there is help available out there; you just need to know how to access it.

A while ago I researched where the closest MS Society charity shop was as I’d had a clearout. There actually aren’t that many. But this particular branch in West London provide a local ambulance service for folks with MS, helping them stay connected and to be able to attend appointments. What an amazing service, but again, you’d have to live in the area to be able to access this provision.

Anyways, that’s my story, hope it’s relevant! X


stumbler
1 month ago

@gpeps , how do they expect to create consistency in the UK, when England, Scotland and Wales are autonomous bodies?

We are no longer a United Kingdom……


marajade
1 month ago

@gpeps, I’m jealous when we read about the care in the UK. The centers, and the MS nurses, and the carers all sound great. The new Neurologist that I’m having to start with has stated she doesn’t know much about MS. That’s scary. She’s trying to put me on Tysabri again because that’s what I had before. She tried calling it to a normal Pharmacy. I had to tell her it’s an infusion given at an infusion center. Then she made an appointment but didn’t tell me to take the JCV test. Again, I had to tell her it’s required. I’d love to have centers and nurses who know what’s going on!


peterfrancis
1 month ago

I was Diagnosed with SPMS almost a year ago, my thoughts and feelings towards MS Services I’ve experienced are mostly positive, mixed with a little bit of a feeling of “Well. is that it?”.

Even before official diagnosis I had an Occupational Therapist check over where I was living and recommended me moving in to a Bungalow. She got the ball rolling, along with sorting out having me checked over for an electric wheelchair, which went well as I’m now waiting for it to be delivered.

On a more negative note, I haven’t had any contact with the OP for months, not that there is anything I desperately need from them but, it seems a very cold and methodical process being in Occupational Therapy, you’re just one job of many or so it seems.


gpeps
1 month ago

Thank you for your replies.

@vixen thanks for sharing about you and your sister. May I ask what borough of London she lives in? How much of the lack of support do you think is because she lives in a different borough, as opposed to her having PPMS?

Very glad to hear the FES is helping her.

@stumbler it’s complicated isn’t it? I lose track of the differences between the UK countries. I appreciate that these variances lead to an inequality of their own.

@marajade you’re quite right, many of us in the UK are fortunate with our access to care and services. It’s all relative. I’m sorry that you’re having to educate your neurologist about MS treatments – that’s worrying. Does she acknowledge that her knowledge of MS is limited? I hope you’re managing okay under the circumstances.

@peterfrancis you sum the situation up well at the end of your post – we are just one patient of many. The caseloads for many HCPs and way above the optimum and nearly everyone I speak to say how understaffed they are. Do you have a way of contacting your MS team if you need them? I hope your new chair arrives soon and gives you added independence.

Really interesting to hear the different perspectives. Please keep them coming.

George


vixen
1 month ago

She lives in Croydon. And given that she had a shock diagnosis at the beginning of 2017 with PPMS, I really don’t think that should have been left unsupported at this vulnerable time. Maybe I’m feeling protective, but I have always felt that having RRMS as I do, there is more time and energy invested and that can’t be right….Another example, is that I am entitled to Ocrevus, but she isn’t, due to the decision by NICE. Based mainly on economics. One good thing to come of that though, is that her husband wrote to their MP and he and I have been invited to Westminster next week, yay!
Thanks @gpeps


grandma
1 month ago

I’m one of the old codgers. Had the beast for 26 years. Our local ms society paid half our first ms nurses wages as our local hospital 26 years ago couldn’t afford her. There us now a team of 4-6 along with the neurologist , who is an ms specialist, but whom I haven’t seen for 8 years. He will not meet me, I have to see my ms nurse every 3 months because I’m on Tecfidera, so need to have the usual tests to make sure all is ok. I relapsed last week. I know my relapses well, they invariably follow the same pattern which I know of old. I usually know more about ms in general and mine in particular than the very junior doctors dealing with me in A&E. They decided not to treat me, they didn’t believe I was having a relapse, they wanted to observe me for 24 hrs in a bay in A&E. I call an ambulance in the middle of the night because I am relapsing. For 19 years I drove myself to hospital, but mr government has taken my mobility car away inFeb this year (I have to go to court to get it back, was told it would be 6-8 months to hearing, the 8 mths are now up, I called the other day to be told it will be after Christmas) I lose my sight in 12-24 hrs unless I am treated with Steroids. They refused to treat me as my sight started to go fuzzy after 10 hrs (7 hrs wait) in A&E, discharged myself and came home in a taxi as I gas oral methylpredisolone at home, and even though intravenous is much quicker, any port in a storm. So that’s the Story in Stoke. We have a Hugh University hospital. The ms nurses do not return calls, even emergency ones. They do the neurologists job without being paid for it. They know more of the day to day problems with ms. They can refer you to OT’s Speech therapists etc., but they are too busy, seeing the continuous stream of people with ms cos if they didn’t, the 2 yr wait to see a neurologist would be 20 years. Hope this is of use to,you. By the way, I realise that defferent people have different experiences, but it dies make a difference where you live, and in my case ‘if your face fits’ with the local hospital and mine doesn’t so perhaps experiences are not the same for all.


mlgilber1
1 month ago

@marajade Hey! That is frightening that your neuro tried to call an infusion into the regular pharmacy. My first neurologist did speak up and told me she hasn’t worked with patients with aggressive MS, but she still knew her MS meds and other information and finally referred me to the Barrow Neurological Institute here in Arizona. They told me I’d have to wait 3 months to be seen and she didn’t want me to wait so found another MS specialist, but thankfully the neurological institute took on another doctor and were able to get me in right away and now I have an MS nurse and everything which I’m so grateful for. When I first joined shift and read the posts about MS nurses I had no idea what that even was and was so confused. Can’t your neurologist refer you somewhere else? Even if there isn’t a neurology center near by there should be doctors with their specialty in MS or autoimmune diseases. I really hope you’re able to find somewhere else to go soon. Best of luck! Hope you’re feeling well!


katy79
1 month ago

@gpeps

I’m RRMS (diagnosed 2016). I live in North Kent. Initial diagnosis was prompted by numb toes/ groin which lead to an MRI at A&E which showed lesions on my spine. I immediately took a private referral and was diagnosed within 2 weeks. The neuro I saw privately at London Bridge transferred me back to himself on the NHS for treatment. This resulted in my care being moved from my local hospital to KCH. This was a game changer for me.

I had an initial appointment with the local hospital MS nurse and she was conservative in the extreme – and had never had a patient on Lem due to the fact it was “too scary” and she wouldnt recommend it. I understand the local neuro is also conservative in who he will refer for Lem. I was told to avoid heat (we changed holiday plans as a result) and over exerting myself even if I felt ok (so I cancelled long distance hikes).

The team at KCH recognised I understood the risks of Lem and, despite only mild initial symptoms, met the criteria and promptly put me on it. I’m over a year post R2. They also encouraged me to keep up an active healthy life – with no need to avoid heat if I didn’t suffer uhtoffs (so my honeymoon this year was hiking sandunes in Namibia and in August I walked 100km in under 20 hours for MS Soc).

More importantly, I have regular contact with my MS nurse at Kings (appointments every 3 months – but she is available by phone/ email between those appointments). I am comfortable she knows “me” – and if ever I have had any concerns about my health she has taken them seriously and obtained follow up tests for me (including with other departments to rule out Non- MS / Lemtrada issues). I have a yearly MRI and yearly appointment with my neuro (which is always brief to the point of comedy but helpful).

One issue is that the timing of my MRI and neuro appointment are out of sync (MRI was June but I see the neuro start of Nov). I get headline results from my nurse – but any detailed discussion needs to wait for the neuro. I hope that if the MRI showed activity / a need to escalate treatment there would be opportunity to pull the neuro appointment forwards (although possibly hard with NHS scheduling). Fortunately I’ve not had to test this – but it does leave me feeling a little exposed.

Overall- I think the care from KCH has been great – including their willingness to allow patients to have a say in their treatment, encouragement to crack on with healthy life, administration of Lem and availability/ standard of care in follow up.

K


mermaidia11
1 month ago

– [ ] @gpeps

I’m up North and it’s changed dramatically. At first there was a nurse at the end of the phone, then an ansa machine service, now you can’t even leave a message, you have to get referred by your doctor if you want to speak to one

.The Walton Centre in liverpool used to be professional and caring -now it’s like the poorhouse.
You are very much a number on a very busy conveyor belt.

The nhs is crumbling,
it hasn’t got the same resources it once had. Inevitably, there isn’t the same level of support and accessibility, and a disparity between availability within trusts.

This is common with all illnesses these days, and it’s only going to get worse.

( The British medical journal have even published a paper on the dwindling lack of resources for people with MS.)

And the resources it does, seem to be reserved for the drug pushers and takers. And quite rightly so, the treatments need to be closely monitored.

It doesn’t go away, but secondary progressives are nevertheless put out to pasture and left to get on with it, despite this being the time when you need support the most.


peterfrancis
1 month ago

@gpeps

Yes, I do have the Phone numbers for my MS Nurse and OP Team, so can contact them if I ever need to.


markthesparks
1 month ago

Hi….just joined the forum and felt I needed to join the conversation. I was diagnosed with PPMS in July of this year and after being told by the neurologist I was sent on my way with no info about who to contact about questions etc….I was prescribed Baclofen 20mg per day. I received an appointment to see an MS nurse about 6 weeks later and also a physio appointment afterwards….this was then rescheduled due to staff shortages, I eventually got to see my MS nurse who was very helpful and was promised an appointment with the physio would be forthcoming. 3 weeks on and I’m still waiting, the impact it’s had on my life is indescribable as I’m not able to work now as due to the spasticity in my legs I’m unable to go up steps etc or drive….thanks to sites like these I’ve been able to research things but feel the lack of support offered to me as well as different meds etc has been poor ☹️


supersmileygal
1 month ago

Hello George!

I’m fortunate to live in London- fortunate because there are MSers I have spoken to who live in areas with district nurses and hospitals miles away don’t seem to have the same access as I do.

I see my neuro for 15 minutes a year but am in much more contact with my MS nurse. She is part-time, but part of a team of MS nurses who I feel I can call upon. Her/their response rate is, in my opinion, very quick especially considering they are often liaising back and forth with neuros before coming back to me. They have been quick to refer and any time lag is usually down to the typical wait in the NHS system.

My journey to DMDs was less successful, however, as I was deemed sufficiently fit not to be offered them (My neuro/local protocol did not subscribe to the time matters ethos), for 11 years from onset (8 years from diagbosis), and even then I had to blub my way through an appointment, having read the Time Matters report.

I hope this helps,
Carla


gpeps
1 month ago

Thanks @vixen – she should definitely be receiving more support. Glad you got a Westminster visit out of it though

@mlgilber1 – glad to hear you’re being well looked after now. Also, good that your first neuro was open about their experience.

@katy79 – so good to hear such a positive story

@mermaidia11 – I’m sorry to hear you’ve seen such a negative change in your care. As you point out, resources are tight and they will be for the forceable – the challenge is to make best use of the funds that are available. I hope the level of support you receive improves soon.

@peterfrancis – it’s good that you do have this option. Don’t be afraid to use those contact details if you do have any concerns.

@markthesparks – experiencing what you have had to experience is not right. I’m very sorry you’ve been left waiting repeatedly. Have you called to chase? I would recommend calling your MS team every day until you get an appointment. Try different routes in too; the ms nurse team, the secretary to the neuros etc. etc. Hopefully they will soon get fed up of hearing from you and get you an appointment. Good luck.

@supersmileygal – I thought that your was going to be a fully positive post… until I got to the end. With regards to your first two paras – it is very good to hear that you have v.good access your HCPs. It’s clear how removed this is from other cases in this thread.

Re. the third para – this response makes my blood boil! It’s appalling that they “did not subscribe to the time matters ethos”. They’re not the one living with MS – surely it’s not their call to make?! That neuro attitude is so outdated. Are you being treated now?

Thank you all. Very helpful to read, although currently thumping my keys in anger. Please keep sharing your experiences.

Also, I’m sure we all recognise that the NHS is incredibly stretched. Does anyone have any ideas of how the situation could be improved without us borrowing more money??


supersmileygal
1 month ago

Thanks George, yes I’ve been on Tecfidera since the end of 2016 but it does make me wonder what has been going on under the radar with my MS for the previous 11 years!
With regards to cost effective change:
1. We need to be more open with praise when things go go right, e.g. how great our MS nurses are – the negatives need to be addressed but we’d also must recognised HCPs are overworked
2. Could we be more informed about what local/national protocols there may be around things like the provision of DMDs, chsnging hospitals/ neuros for better care, vitanin D dosages (which are different depending on who you talk to), etc?I’m all about advocacy, but self-advocacy is more important. I wonder if we would be more confident in challenging the status quo with the right info and right thing to say – I’m not sure many of us know where to start
3. Is there an expert patient advisory group for each health trust and how do we put ourselves forward?
4. The FACETS programme for fatigue run by the MS Society, I think (?), could this be run in part by local MSers rather than the nurses as I believe time is the major reason for not running these?
5. Could various trusts pool resources to provide things like newly-diagnosed conferences (to stop the spread of misinformation which surely adds to the ms nurse workload)?
6. Who are the people we need to lobby in government to raise the profile of MSers? It seems the phrase ‘the disabled’ gets thrown around a lot, however I wonder if politicians really understand the challenges experienced by our community, and how much richer their decision-making would be if they did!

*climbing off my soap box now*

Carla


itasara
1 month ago

I never saw this site before today. I googled a question about traveling with copaxone and that is how I found this site. I do belong to a few MS sites and I find them interesting. I am pretty active on the MS sites on Facebook. I am from the US.
I found out I had MS when I was 57. Had no clue before that although I did have MS hugs and neither I or my internist thought they were just muscular contractions of sorts. Three years before I was diagnosed my 20 year old daughter was diagnosed. Never occurred to me I had it also. I like to hear what others living with MS have to say. I got a degree in nursing many years ago but did not practice very long. stayed home to bring up 5 children who are now adults over 30.


dominics
1 month ago

Dear George,

It is a very interesting queastion. I think there is little doubt that the quality of service differs – unaccebtably so – across the country. I have had the same MS Nurse for 15+ years and we have developed a good relationship so I am very fortunate.

Recently we were talking about the perceptions of quality of service. They remarked that what also makes a huge difference is patient attitudes and engagement. There are patients who take an active interest and engage their treatment providers, and some who are overly passive. The latter often have a have a mixture of expecting everything to be done for them or more commonly never engaging and asking questions. Nor engage with this disease and do more for themselves. Think: excess weight, smoking, physio exercises and so on.

Whilst lack of services is deplorable, it is sad when they have a patient that is seemingly unwilling to engage and participate. A minority of people but saddening nonetheless if the patient becomes vocal that not enough is being done.

The flipside is not having enough resources across the health service to provide ancilliary services in a timely manner. It is all well and good telling someone they need a dietician, knowing they will make the effort, when it takes ages to see one and then ages again to get a follow-up.

If someone is having a nasty relapse the NHS is superb, but the capacity for follow-up is restricted. Thias can only be worse for a patient if there is not an organised team inside the system pushing for the resources.

I can call the nurses anytimne. At worse it is an answerphone. They always call back. Importantly, in the JR the Research and Trial teams share the same space with the pure NHS nurses. This means there is excellent cross-over and knowledge sharing of things like trials, treatments etc.

If there is no research function in a hospital, and the additional funding that attracts, I imagine it is far more difficult for the MS/Neuro teams to provide as good a service as is enjoyed in the major centres. I think: Addenbrookes, London, Oxford, Sheffield, Aberdeen and the SW centres.

Anywhere gets overwhelmed and as ever the squeaky wheel gets the oil. I try to ensure I stay in touch, send the occasional card, bake a few cakes for the team at times, send a Christmas card etc. Small efforts but effective. They remember and appreciate the little things, so are usually happy to indulge me if I start asking harder questions. My favourite is, “I’m no expert, please can you help me understand why X was suggested and Y was decided against?”

One of the best things about Shift.ms is the fact that all the barriers are removed. It is the patient version of the nurses in a large and varied team sharing knowledge with one another. Yes: the NHS is underfunded (as are many key services) and Shift.ms should not be seen as a substitute for medical care, but it is great that it is here.

The variances in care from the NHS side can be addressed (in my humble opinion) by more frequent interaction between care teams (a monthly meeting or videoconference) between the larger research centres and the smaller, less research focused, hospitals.

Good luck in your meeting.

Best,

Dominic


bas76
1 month ago

I am London based and under St Mary’s hospital central London. Was diagnosed 2 years ago by moorfields eye hospital (who are fantastic and thorough) was put onto Avonex with visits to St Mary’s every 3 months to take blood and chat with MS nurse. These meetings were sometimes good and other times bad dependant on who you saw (as there are many deferent nurses) one was terrible didn’t know that heat can cause trigger ms symptoms for some people. However a couple were very compitant and made a few suggestions it seems like luck of the draw if you see a good ms nurse. Back in Nov caught the flew and was convinced I was relapsing, mention this to ms nurse on my quarterly visit but she was extremely dismissive (this was the one who didn’t know about heat) I explained why I felt I was relapsing, fatigue worsening of balance slight drop foot, visual problems in left eye but she just prototype much shrugged her shoulders. I lost my temper and demanded to see my neuro as you can imagine I was just so distracted at this point. She just scribbled this down onsome paper and said she will pass my concerns on. Iabout 2 weeks later I revived written correspondence from my neuro, in short he seemed to be dismissive too and I felt the tone of the letter was making me out to be a trouble maker.
Ended up going to moorfields eye hospital A&E who examined my left eye ran test and discovered I had new damage to left eye nerves which supported my suggestion that I was relapsing. Nero responded and asked them for more info the neuro then write to me finally acknowledging the relapse and suggesting I change meds from Avonex. I feel I am now taken seriously and have been told by both my neuro and an ms nurse that my case was discussed in meetings. This experience has made me feel action is only taken if you can provide evidence or it is really apparent. I thought this was mostly about discussion and any concerns/changes you have are acted on.
I now feel my care has taken a complete u turn and is 100% better since just wish it were like this from day dot!


hels
1 month ago

@gpeps

I’m in Wales. Diagnosed under one NHS Trust and since moved to another as I moved into a new county which falls under a different Trust.

Both Trusts have spared no time in getting me signed up to an MS Nurse and engaged in their systems. Both work on a direct telephone line to the department and calls returned within in a max 48hrs, sooner if you state your having a relapse. I’ve not had to ring about a relapse but have had calls returned within less than 24hrs none the less. The immediate response is equal in both Trusts.

The differences have boiled down to the consultants approach to treating MS. The first trust only talk about meds if you have 2 relapses in a year (I think that’s correct). My current consultant treats every single case with meds. So I went from nobody mentioning DMT’s to someone telling me I needed to get straight on to Techfidera. This was quite scary. I felt like the first trust really let me down by not thinking I needed meds and just let me wander out the door knowing the MS would progress.
But now I’m thinking the hit it hard approach isn’t the best approach for me and my working life but feel like I’m letting the consultant and all progressed MSers down by not taking meds.

Anyway, just wanted to highlight the extreme approaches I’ve experienced in the space of just 2 counties and things boiling down to consultants approaches rather then physical NHS care/support systems in place.


nicecupoftea
4 weeks ago

Hi @gpeps, I live in Liverpool, I am now 30.

Over the 5 years before diagnosis I had symptoms, each lasting months, which the GPs put down to “occular migraine” and “vestibular migraine” or just shrugged their shoulders because when they sent me to ENT, audiology, and eye consultants they didn’t find a cause for my symptoms. When I had weird sensations in my arms and legs on my right side, and electric shocks when I looked down, or hated heat because it made me feel ill, they said “well you haven’t had a stroke” and left it at that. One GP asked me why I was so worried and kept coming back to the GP and I said I was worried it was MS, he laughed and said “it won’t be that” and referred me for a CT scan which came back fine. A balance specialist referred me for an MRI scan but the radiologist rang me and said I couldn’t have one because I’d had a CT scan showing no problems. Eventually, each time, my symptoms went away. 18 months ago I had an insatiable burning itchy sensation that felt like it went to the bone in my right arm and leg which would only be briefly soothed by ice packs, the GP gave me medication for psychotic sensations which, surprise, didn’t work. When this itch went away I was left with partial numbness (which has never gone away) and I saw a GP who asked if it was worse when I was too hot, and decided to refer me to a neurologist at the Walton Centre. I suspect the GP surgery had just received MS awareness training.

I had an MRI scan on head and neck which showed lesions all along my corpus callosum and in my brain stem and was diagnosed with RRMS within a few weeks from the referral. He said that I probably would have received a diagnosis 5 years prior to this if I’d been sent to a neurologist at that point but that it was okay because I’d had 5 years symptom free (which isn’t true) and would therefore also not be given DMTs and to just go and live my life. I had been keeping records of all my unexplained symptoms/”migraines” to see if I could find the migraine triggers etc. as it was so debilitating and was trying to convince the GP to refer me to see a neurologist for the migraines. I was on migraines preventative treatments which also weren’t working (surprise). I went back through my 5 years worth of data with a new eye and took them to the MS nurse to pass to the neurologist. When this went nowhere I went through it again with my new understanding of what would be considered a relapse and reduced the data to the times I believe would count under the strict rules of what would be a relapse and requested to see the neurologist. On this basis he agreed to send me for another MRI scan which showed more lesions within those 6 months. The neurologist agreed that this would make me eligible for treatment and I said I’d like to discuss Lemtrada as I’d like to go in hard and hope rather than go in soft and hope. He laughed and said I wouldn’t get that (I was definitely eligible for it) and he discussed the pros and cons of treatment. I ruled out the treatments in the least effective bracket which essentially left me with Tecfidera which he agreed to. The time between this and seeing the ms nurse to start the Tecfidera was pretty bad and I was worried it wouldn’t be within the timeframe for when the MRI scan was done because I had read you were meant to have had an MRI scan done within 3 months. I tried to ask for cancellations but this seemed impossible. As it is it was a little over the 3 months.

I was also referred to the OT, physiotherapist, and opthalmologist for advice and a baseline assessment after all my previous relapses left me with various residual issues.

The time between diagnosis and starting treatment I felt entirely high and dry and it was very hard to speak to anyone, and I did have to ring the neurologist secretary to get anywhere. Once I started treatment I have been able to speak to an MS nurse when I am worried about symptoms (I think they do a phone clinic on Thursdays so there have been times I’ve rung on Thursday and had to wait until the following Thursday to speak to an MS nurse), and I go in every 3 months because of the monitoring for the Tecfidera. Occasionally my appointments have been moved and I have had to spend a lot of time on the phone trying to reach someone and then in explaining that I have to go in every 3 months for the blood tests.

The centre has an intro day for newly diagnosed people to meet the team etc. I will be attending it next month…20 months after diagnosis.

I feel quite mixed about the service. I suspect the majority of the failings come down to the service being so overstretched and I get the feeling it is just about managing and teetering on the edge. Sometimes it is quick and sometimes it really isn’t and seems impossible to get anywhere. I am pleased that I, and my GP, receive a letter following appointments.

Since I’ve had a diagnosis the GPs are more responsive e.g. referral to check out whether a new issue is a new symptom or unrelated issue.

What I think might help…
MS awareness training for GPs
One GP rather than any GP that’s there, especially if there are unexplained symptoms
Somewhere for the GP to ring for advice about neurological issues (I’ve had a GP do this for an unrelated ENT issue)
I don’t know what the Walton can do that isn’t about money and more MS nurses…

The Walton has a space for a Brain Charity liaison person which is good. Maybe more connection with MS society or MS trust? I’m not sure if they are represented but I’ve never seen them there.
I think there needs to be more collaboration with patients – I am incredibly organised and have kept lots of data and it took a lot of effort on my part to have this looked at and taken seriously to show that I should be considered for a DMT.


spangle
4 weeks ago

@gpeps I live in Cardiff and can’t fault the care I’ve received from my MS team. No issues with access to DMTs I was offered to partake in a clinical trial for Ublituximab, which has worked really well for me.
I am aware that I’m very lucky though as not all hospitals have research facilities. From speaking to nurses and reps from MS Society, your not likely to receive this level of care anywhere else in Wales.


gpeps
4 weeks ago

@supersmileygal thank you for your reply on cost effective changes – you’ve pretty much done my talk for me! 😉 Totally agree that self-advocacy is an area that can be fostered to improve people’s access.

@itasara welcome to Shift.ms – we are glad you found us. Thank you for sharing your story. I hope you and your family are doing okay.

@dominics thank you for your reply. Agree that patient engagement is such a key driver in the care we receive and health outcomes. You’re right that services vary wildly from the specialist centres to the smaller local centres. Regular comms between the two would be a sensible move. Smart to keep your team sweet with a few touches of gratitude. I’m sure this makes all the difference when you need support. Glad to hear that Shift.ms is playing a role.

@bas76 sorry that you had to fight so hard to get heard. Providing written info of symptoms and other evidence is going to help, I’m just sorry you had to push so hard. Glad things are better now though.

@hels thanks for sharing your experiences of your contrasting experiences. You’re letting anyone else down by not taking the meds – that is a personal decision. Whatever choices we end up making regarding DMTs, I would much prefer to have a proactive neuro who wanted to avoid damage. Your situation does highlight the variance in neuro attitudes.

@nicecupoftea thank you so much for sharing your story. I’m so sorry that you had to go through such a long period and push so hard before your were referred for an MRI. This is shocking. One of the key aims of the Brain Health: Time Matters paper – https://www.msbrainhealth.org/report – was to increase awareness amongst GPs on the importance of speedy referrals. Very impressive that you kept such thorough records – it shows the value in tracking your health. Thanks for your suggestions too – agree.

@spangle I’m glad you’re being well looked after. Good luck with Ublituximab (I had to google that!) – interested t hear how it goes.

Thanks all, I’m going to digest tomorrow and try and work out how best to present next week… invaluable to hear your experiences

Thank you x


supersmileygal
4 weeks ago

You’re welcome George, any time!
Carla

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