I’m just wondering if anyone knows if there is some sort of league table published showing which MS centre is best - most knowledgeable, most speedy, most available to patients?
My daughter has been seen at Frenchay since that is where her paediatrician was based and where she was hospitalised for supposed ADEM some years ago - but Bath is closer to us, so if it’s as good it would be a lot easier for her to be seen there.
If anyone has any personal knowledge of either/both that would be brilliant. Thanks!
Hmm, and that also raises the more hypothetical question - where in the world is the best place for treatment? The most up to date drugs etc? (Not that I’m going to be flying her off to Venezuela or somewhere! Just curious!)
V
I may be slightly biased, as I’m with Frenchay, but I would say they are one of the UK’s leading MS research teams, and much better-known than Bath! Of course, research excellence may not translate into patient experience - especially for patients like me, who aren’t particularly interested in enrolling on research trials. For me, it probably wouldn’t matter much if my neuro team wasn’t at the forefront of research. But as they are, I think I can feel fairly confident they know what they’re doing (although on gripe I have is they are persistently dismissive of non-neurological pain, which I find frustrating, as it’s my most troublesome kind).
Bath? Well, I’ve not really heard of them in the context of MS research, but that sort of tells a story in itself, don’t you think? I think if you are an MS researcher who wishes to work in the Southwest, the accepted centre is Frenchay.
I know nothing about Bath - I just saw on a map that they have an MS centre ! But the dedicated centre at Frenchay - and the relapse clinic - are very reassuring.
(My daughter preferred going to Bristol Chn’s Hospital as we would then stroll into town and she could shop at Primark! And no one ever mentioned why they were testing her, so she never worried! All different now as she’s 18 AND has a diagnosis.)
My mom was seen by a professor at Frenchay and you couldn’t fault the treatment she got.
When she went into a nursing home and was no longer communicating the gps there wanted to change all of her pain meds as some were a bit controversial but were known to be the only things that worked.
It was only because of the prof’s interventions that the gps became over ruled,and he continued to monitor her care even when bed bound.
Last time I checked, there were two Neurologists at Bath, one with an interest in MS. There is also a general Neurology Nurse covering the area I live in (good - met her a few times in connection with my wife’s Parkinson’s). Frenchay is the place to go by all accounts. It has a high reputation for more than MS treatment, by the way.
Now I am also close to Bath, but travel to Swindon (for historical reasons). The Neuro who used to see me has left, I am assigned to a new one whom I have never met (this is the second time), but I trust the MS Nurses at Swindon. So, I may soon have to make the decision as to staying with Swindon, or getting transferred to RUH Bath - when everything I have heard says that Frenchay is the place for MS treatment. Getting to Frenchay would be a total pain driving (and I cannot look forward to more than four years driving left) and is well nigh impossible by public transport. Bath, on the other hand, is a lot easier to get to - by car or public transport.
You might want to think about such things as whether Frenchay has its own MRI scanner (I believe it does) - when my wife had an MRI done at Bath, it was in a mobile scanner in a car-park, operated by a private contractor.
So, there is little doubt that Frenchay is the best place to go - but think of the future. Think of accessibility in the future, as well as right now, and remember that one of the problems faced by anywhere that has a really good reputation is retaining their staff. In this context, please note that hospitals in the South West are in favour of Regional Pay Agreements (which usually means cutting salaries).
My crystal ball (quite old and seriously underpowered) cannot come up with a good solution. You don’t say just where you are, Vicky, but you might like to note that all the staff in the remaining community hospitals in West Wiltshire can be in the odd position of reporting (professionally) to someone based in Bath, but being administered by the GWH in Swindon. I think I would want to ask quite a few more questions, if I were in your shoes.
Hi I have just been diagnosed and as I paid to see a private neurologist I saw Paul Lyons from bath rhu who has referred me to the run for treatment. He seemed very good but I have nothing to compare and I am waiting for the ms nurse to contact me… The thing that I would say is that he did advise for me to go onto DMD even though this is my first clinical attack as I have other longstanding lesions on my brain as he thinks there is a high risk that I will have another and he mentioned that frenchay wouldn’t do this until I had another attack. It is shown that if you start these after your first clinical attack you have a less chance of having another in the following 2 years. I’m new to all this and have also been debating about on the frenchay/bath route and would appreciate anyone’s advise on there experiences.
Thank you for your very considered replies - I am still not sure what to do. Frenchay is a b***** to get to and then to park in - and it is true that my daughter hasn’t been given any meds, on the grounds that she isn’t ill enough. When she was being seen for ADEM at BCH she didn’t have any meds then either. But she is having a number of symptoms now and I do wonder if she needs to start meds (hence my enquiry).
Her consultant also told her that she doesn’t need to report her diagnosis to DVLA, and I understand from pple here that that is incorrect.
Bath is our closest hospital (we are in Somerset). There is an MRI there now, though I’m not sure if it is one of the most modern and precise ones.
Zoe, when you hear back from the RUH MS nurse, could you let me know what your judgment is? And Geoff, could you buff up that crystal ball please??!
Hi Vicky I can’t help with advice about hospitals in your area as I no longer live in the West (although I used to) but just wondered how your daughter was getting on? Is she more resigned to the dx yet? Although it is still early days! Hope she is not feeling too bad and that you are managing OK. Teresa xx
Hi Teresa,
Thank you so much for asking! No, she isn’t exactly doing well with getting used to it. She’s been put on an anti-depressant and that has really helped to lift her mood, and she’s now much more able to distract herself from the diagnosis. But there are times when she has a complete panic and gets very upset about it. (And that feels perfectly logical to me - she has a scary diagnosis of an illness that might really harm her body…but I feel she’s a little more able to see that it isn’t all as desperate as she fears, and that treatments are out there… but TBH it’s pretty scary for me too.) Still waiting for the CBT - due to start any time soon, or so they say!
It is so scary - especially if you are as young as your daughter. I understand fully why it is so scary for you too. I have a son of almost 18 and I know that I would find it hard to deal with. He had 3 huge hip operations when he was 3,5 and 9 and that was tough. My second son had an emergency right hemicolectomy 2 years ago when he was 14 and he was in ICU for 24 hours and was finally dx’d with Crohn’s disease. That was very, very scary. So I have a little inkling of how you feel, although I know it’s not the same. They are so precious and we would rather swap places with them more than anything but it is beyond frustration that we can’t. I am so glad that the ADs are helping. I guess time will probably help more than anything because she will hopefully be able to see that she is living a full and happy life. Good news that CBT is coming soon. Thinking of you both, Teresa xx
One crystal ball, duly polished up (and it is still old and slow) …
I read what the others have written. Dr Lyons at RUH sounds like the first Neuro I saw. This was private, but within weeks I had a call from one of his assistants to arrange for my Lumbar Puncture in the GWH, and he had me back in the NHS as quick as that.
Karen (rizzo) will tell you that there are better scanners than 1.5 T, but I see that RUH has two of them (so presumably less waiting if you need one). I think that Zoe’s experience with a Bath based MS nurse will help the decision (yes, Zoe, I would like to know as well). My experience with RUH and other members of my family has been good.
You can say that I am not now concerned at the thought of having to transfer to Bath (but I know that the Neurology nurse who covers my area does not do any part of Somerset).
I have two other comments:
assuming your daughter has mobility problems of any sort (PM me on this) you need to get her sorted out with a Blue Badge. This is invaluable for parking at any of the Hospitals mentioned in this thread.
your daughter must notify DVLA that she has been diagnosed with MS. If she has her own car, she needs to advise her insurance company as well (or they could disclaim her). Again, PM me on this.
Hi sorry its taken a while to reply, I have meet the ms nurse who seemed very nice my blood test s and drugs are coming next week and the nurse is coming to go through the procedure with me. I had a bit of a panic last week and called her and she called me back within an hour so, so far so good. I’m definitely pleased I have been given the option of dmds and believe bath is more open with offering this. Bath has a relapse clinic every Tuesday. Hope this helps zoe
What our children put us through! There is nothing worse than seeing your child suffer - if I could take my daughter’s diagnosis instead of her, I’d do it in an instant. And when she cries, and I can’t ease the emotional pain, that is just terrible. It must have been agony for you, with your two sons going through such serious illnesses - and at such young ages! I hope they’re both much better now. Am I right in thinking Crohn’s disease is something that is managed rather than cured? If so, that can’t be easy for ether of you to deal with. Best wishes. V
Geoff,
Luckily my daughter doesn’t have any mobility problems at all, so we wouldn’t get a Blue Badge, though thanks for pointing it out. As for DVLA - and the insurance company - our consultant said we definitely didn’t need to inform anyone. I assume he said this on the grounds that her symoptoms are pretty minor - but it’s scary to be given the wrong info on something so important. She does have a little car, and to think of her being uninsured is terrifying! Thank you for that (I think!)
Hi Zoe,
It sounds as though you’re getting really good treatment from the RUH. I rang our MS nurse to ask about drugs and my daughter isn’t eligible, though they’e said she can go and see someone. But she doesn’t want to. However, someone on here mentioned tonic water - apparently the quinine can help with tremors. Well, I bought lots of tonic water and my daughter is drinking half a bottle of it a day (to wash down the heap of vitamins and suppplements she’s also taking!) - and the tremor has stopped! Whatever the reason - placebo effect, coincidence - I don’t care! It has cheered her up enormously.
Hi Vicky Thanks for your kind thoughts about my sons. It appears from a recent colonoscopy that there is no trace of Crohn’s in Joe’s bowel. It appears that his operation cut away the damaged area and that meds he still takes have prevented it returning. The specialist thinks he may not see a return of it - fingers crossed. Apparently these meds only work on Crohn’s patients who have had surgery. Both are well and healthy - long may this continue! Teresa xx PS glad your daughter’s tremors are under control!
Not too sure why there’s any question mark over Frenchay’s willingness to prescribe DMDs. I was offered them promptly, despite only just fulfilling the “two relapses in two years” criterion (I think they were 22 months apart), and neither was, objectively speaking, “serious” - i.e. I wasn’t severely disabled, or hospitalised, and didn’t require steroids.
Add to that, the first “qualifying” relapse had not been clinically verified at all (because I had no idea it might be anything serious, and hadn’t bothered going to the doctor). They were perfectly happy to accept my word for it, and not say we had to wait for another, which they had seen.
None of this adds up to a “grudging” attitude to prescribing, in my book. In the event, I declined anyway, which is totally off-topic to this thread. But nobody at Frenchay would have stood in my way, if I’d wanted to press ahead with them.
I just wanted to reassure anyone who might have been referred to Frenchay that there’s no reason to think they are “2nd class” when it comes to availability of DMDs.
Hi Vicky, I recently transferred to thr RUH from Taunton Musgrove as I moved to Wiltshire. I saw Dr Lyons a few weeks ago and he was very nice. I am also under urology at the RUH too and I have no complaints. I see the neuro nurse at my local hospital and she is lovely too. Hard decision but I am sure which ever you decide for your daughter you will get good care. Karen x
Hi Tina I’m so new to all this 7 weeks from diagnosis and no attacks I was aware of before. I went straight to bath a and e so was sent there for follow up and I debated on whether frenchay would be better. I’m really glad that they do offer dmds if thats what an individual wishes, it was just that I was told by the run that I wouldn’t get them at frenchay so I apologize if that was incorrect information. My head is all over the place trying to do the best for myself and I have researched and frenchay is definitely a centre of excellence . I would love to chat and find out how you are dealing with things without dmds and love the site for support and information. Its hard when like me you look into everything and feel out of control. I have modified my diet and started taking vitamin d3 but the thing with ms is that you just don’t know what will help. I suppose we just have to wait and see what happens something I’m not good at and hope we get the correct care . this site is my first point of call for advice so thank you.
No problem - I just didn’t want anyone reading this who might have been referred to Frenchay to get scared they don’t offer DMDs there. As with all hospitals, you do have to meet the qualifying criteria, but I was only a “borderline” qualifier, yet nobody voiced any objections. I felt it was very much my choice, and nobody was saying I should or shouldn’t - but it was clear the option was there.
Feel free to PM me if there’s anything you want to ask. I’m not trying to deter anyone from DMDs, I just didn’t feel they were right for me personally, and my neuro didn’t have strong views either way (that doesn’t mean he’s anti-DMDs - he just doesn’t think they’re right for everyone). I’m still grateful to have had the choice. I do think patient choice is important, even if you ultimately say no. It’s better than being TOLD you can’t have something, when you might have wanted to try.
I don’t think there’s anything wrong with the care you will receive at Bath - they’re just not known as a centre of excellence in the same way as Frenchay - but that doesn’t mean they’re not very good in their own right.
Once things have settled down and you’ve got over the shock of diagnosis (which you do, believe it or not), you may find you have little interaction with the hospital anyway. For me it’s a place I go once or twice a year, usually for five or ten minutes, but the record is about 30 seconds! So hospital doesn’t feature hugely in my life, and it’s mostly about managing things myself, day-to-day.
However, I do have an emergency number to ring, if things took a sudden, dramatic turn for the worse, so I wouldn’t have to wait six months for the next appointment.
Not really saying Frenchay is the best as i can not comment on Bath but my diagnosis was was a complex one as my symptoms were not typical / straight forward for the local consultant so he referred me to Frenchay to be seen by the Professor there and finally i got my answer.
So i suppose its got the research centre and a top person very intrested in MS .
We found it easy enough and parking was not an issue (we were early app). The only thing i would say was the Lumber i had there was the worse no organisation and no cuppa unlike the nice dept at Tauntan. And i had the post headache after to.
Not sure if this is what you need but just thought i would add.