Need help - living in the UK with MS?

Everyday living
1

Hello everybody!

I am in dire need of help and advice.

Me and my better half are considering moving back to England once more (we are thinking in the area of Reading/Canterbury etc).

We are currently in Germany, but we’d have much better work and salary opportunities back in the UK.

In Germany I have:

a regular appointment with my neurologist, about every 3 months

In case of an emergency I’ll be seen by my neurologist or going to the neurological clinic where i was also diagnosed. It ha happened once, I was taken by ambulance and was basically seen immediately (they thought it was a relapse)

I am taking Copaxone 40ml 3 times per week

I’ve been diagnosed with relapsing/remitting MS this August

I am receiving physiotherapy 2 times per week, and ergo therapy 2 times per week, this will be continued treatments - the neurologist simply writes new prescriptions every month, health insurance cannot negate that treatment is necessary

In Germany you have an MRI check-up every 6 months, and any time the neurologist deems it necessary

Can anybody please tell me how your experiences in England are, I’ve gotten info from the MS society, but I wish to kow from fellow MSlers how things actually work.

Is ergo therapy and physio covered by the NHS?

What else can you tell me that could be important for me?

We will not move until we a sure my treatment will continue and I will receive the adequate care.

I will indeed be very thankful for help.

Best wishes

2

Hi I was diagnosed at about the same time as you. I live in kent and my neurologist is in Canterbury. They have been outstanding, my MS nurse again from Canterbury is there 24/7 if I need her, physio is available and it only took them 3 months from diagnosis to starting me on Tysabri. In Canterbury you also have the multi million pound MS therapy centre where for £12 a year they can give advice, massage, oxygen treatment, aqua pool etc. I cannot tell you how good my treatment has been in Kent since my diagnosis. Hope that helps.

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3

Hi Pops,

thanks so, so much for your reply!

I am positively shocked and first of all very happy that you are taken care of so well.

I didn’t even know about the MS centre in Canterbury yet, and for 12 quid a year, that’s amazing.

Do you know the future plans for MRIs? Or they are ordered as the neurologist thinks it’s necessary?

A weight was indeed lifted fro my shoulders, it’s getting tough in Germany economically and I used to live in the UK and will find a good job soon, fingers crossed.

Thank you so much again.

I hope you won’t mind if I get in touch in the future with you

4

Hey no problem. I have and will continue to have MRI every 6 months and see my Neuro every 3 months. Get in touch whenever u like, if I can help I will. Hope all works out well for you x

5

Hi

I suspect that Pops has an excellent NHS neurological service. And if you are lucky enough to live in the right area, then you can receive an equally good service. That is to say that there are many places within the UK that have as good a service, but there are also many that, to be frank, have an abysmal service. Most, are like the area I live in, somewhere in between. Unfortunately the NHS works a ‘postcode lottery’ type of system.

I have access to a good MS nurse, not 24/7, but reasonably reachable. I see her maybe every 6 months. She is supportive, but can only do so much within the system.

I see a good neurologist, about every 6 to 12 months, he is very good on up to date DMDs, but access to these can often be very slow. Also, access to IV steroids is very difficult. For example, I saw him last week (he fitted me in last minute) because I have just stopped taking my DMD due to side effects. We agreed that I’d stay off a DMD for a year or so, pending a relapse and some clear remission. I asked whether when/if I have such a relapse it could be arranged that I have IV steroids as they seem to work best for me, and I want to be sure, if there is to be remission, that it happens asap. He agreed that it would be best but “it will depend on bed availability”. The last time he wanted me to have IV steroids, it took 3 months to arrange!!

I find it unimaginable that a relapse would be treated as an emergency, I once had a very bad relapse where I went to accident and emergency and was admitted to hospital. That was a really bad relapse, where I lost all feeling and movement below the waist (ie. became unable to walk or even move a single toe) over a period of 3 days. Other relapses have been dealt with in the main by the MS nurse and GP and I’ve been offered oral steroids.

The nurses who support my neurologist’s DMD provision are excellent. They are easily reachable by text or phone and are very helpful.

I’ve had quite a few MRI scans, but there is no system whereby you’d routinely have one every 6 months or even annually. Many people haven’t had one for years. I’ve had them due to diagnosis originally and because of DMDs.

Access to disease modifying drugs is patchy. You will get copaxone easily (I’d not heard of the 3 times per week version but I’m sure it’s available in the UK). If you have a good neurologist you will be given many options for DMDs, but some people are not given half the choices they should be offered.

I am also fortunate enough to see a neurological rehab specialist once a year. He is excellent on referrals to other services and makes very good recommendations regarding symptom relief.

I see a physiotherapist every so often. Typically, I’ll see someone once per week for maybe a month, then I’ll be left to get on with exercises on my own. Seeing a physio twice per week (unless privately funded) is unheard of under the NHS. I’ve not heard of ergo therapy. So I’m unsure whether this is or is not available on the NHS.

I have self funded FES (functional electrical stimulation for foot drop) as it is not supported in my local area. In other areas, it is NHS funded.

So, as you can see, in all likelihood, you will get a reasonable NHS service. Maybe not as good as in Germany in some areas, maybe better in others. But it will all depend on the area you live in.

Best of luck.

Sue

6

Hi,

Just so you know the MS Therapy centre in Canterbury charges for treatment. The £12 is just the annual joining fee. Let me know if you want specific charges.

All the best,

Peter

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7

Hi Peter,

thanks, I didn’t realise that and it doesn’t say so on the website.

I’d be grateful for prices fo physio, occupational therapy etc if it’s not too much of a bother for you.

Cheers

8

Hi Pops,

is the MRI every 6 month a regular thing or is it especially done for you? The MS society told me one will have an RI if the neuro thinks it is necessary and one may only see one’s neuro once per year.

What I am trying to ask is are there special circumstances in your case?

All the best &cheers

9

Hi Sue

thanks very much for your response.

I will get back to you soon, I just have a lot to deal with atm. I had a relapse a few years back and subsequently got Cortison IVs for 3 days, this was quiet difficult for me psychologically. I mean, to deal with it.

Now I’m sick, I seem to get sick much more often now than I sed to but I also have much, much more stress and don’t eat enough/well enough. I have to sort that out.

We are looking to move to Reading as there are more jobs there than in Canterbury, they also have an MS Center there, I have to get in touch with them regarding prices etc.

It’s just so much harder for me to do than I though (again psachologically).

I’ll get in touch again.

Take care and I wish you all the best.

10

I know I am not Pops, and I am not in the area you are looking to move to.

I see my neuro once or twice a year, and have never had another MRI since diagnosis, 5+ years ago.

Personally, this suits me, as I do not want to become overly medicalised, and be always at the hospital or in the scanner. I prefer to contact them if there’s a problem, but otherwise live my life as normally as possible, for as long as possible, without an undue amount of monitoring.

I don’t want to give the impression this is purely personal choice, and that if I wanted an MRI every six months I could have one.

That’s not the way it works round here, and, as your reply from the MS Soc. suggests, I think it’s the norm to see your neuro only infrequently, and NOT to have follow-up MRIs as standard, unless there are particular reasons (assess effectiveness of a treatment, for example). However, for some of us, this low level of intervention works out quite well.

I tend to find my hospital appointments both stressful, and largely pointless, as we tend to mull a few things over, before deciding to leave everything unchanged. Nothing “bad” has ever happened to me at the hospital - it’s just I’d rather not be there at all, and unless there’s going to be some tangible benefit - which there usually isn’t - I consider the less time spent there the better. I know they do their best, and my neuro is constantly apologetic that there’s not more he can do about more things (I’m not in the “severely affected” category, but still have a lot of nagging pain and discomfort) - but realistically, I know I’m not going to go there one day, and he can suddenly wave a magic wand and sort it all out. I tend only to keep my appointments in case there was some major breakthrough that might potentially benefit me. I feel that if I don’t show my face at least once a year, to keep myself on the books, I might miss out on something.

But usually, it’s just a chat, and: “OK, see you in six months” (or a year, or whatever it is).

Tina

11

I don’t know what the MS services in the Reading area all like, I’m afraid. The services where I am (West Midlands) are poor I’d say. The MS nurses are very hard to get in touch with, the neurologists impossible to get in touch with between appointments and inclined to postpone appointments or forget to make the next appointment. I used to go to a weekly exercise class run by a physio. This was an NHS service, now discontinued. I was never offered any other kind of physio help.

I now see a good neurologist in London, at the National Hospital for Neurology and Neurosurgery. I was referred to him by my GP and see him on the NHS. There was a question about whether the GP could refer me - he had to ask the practise manager, so it might not always be possible.

There is no standard procedure for treating relapses where I am. If the relapse is really bad (not being able to walk), people get hospitalised. Since I’m on Tysabri, I see a junior doctor every four weeks and they’re very keen to give me steroids if they think I’m relapsing. I was never offered them in the eleven years between diagnosis and starting Tysabri.

12

I am very satisfied with the NHS support I get to help deal with my MS, but have to say that it doesn’t look much like yours in terms of routine MRIs, routine clinician time, ease of access to clinician time etc. Frankly, Germany sounds miles better. And as for supplementary therapies, I guess that many of us will have gone green with envy at the thought of physio twice a week, plus whatever the other thing is, as part of a prescribed and paid-for treatment plan. The NHS is unlikely to pay for anything like that level of therapy, and private health insurance probably wouldn’t either because over here they tend not to cover costs associated with the non-acute aspects of chronic conditions like MS.

However - and it’s a big ‘however’ - the doctors in Germany can’t cure MS either! So maybe the differences in terms of ease of access to clinician time aren’t as important as all that, however irksome and frustrating you might find the arrangements here to be, used as you are to much easier access and more close-in support.

Alison

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13

Good morning

I live in Chatham Kent and I must say I am impressed with what Canterbury has to offer.

I was diagnosed 3 years ago with RRMS, and unfortunately, my local hospital has not been able to retain neurologists. If you are lucky and manage to see a neurologist and they request an urgent MRI, that can take up 3 months if not longer but by then the neurologist has left so you are just left waiting. I cant fault the MS nurses, I see them every 6 months but if I need any advice I just ring them up and they have, to date rang me back the same day and advised.

I had a relapse earlier this year and because of the problems at the hospital, I ended up having to go private. Which I know is not always possible for some people.

Ang

14

Hi,

I just noticed that I did not reply.

Physio £19.50 per 45 minute session.

Reflexology £17 per session.

All the other therapies are around the same price although occupational therapy is provided by Canterbury Council. They also have a team in Herne Bay which run free sessions for physio if you can get on them.

I wish you all the best,

Peter

15

Hi, my MRI are every 6 months as I am on tysabri but am JC positive so they have to check for PML. Yes the MS therapy does have a price list for treatments but it’s a charity so if you can’t pay then you can have the treatments anyway. No one will question it. Ang, I am lucky that my NHS in Ashford and Canterbury are superb and I work in Chatham so have heard stories about it’s NHS there. Give the MS therapy centre in Canterbury a go.

16

Hi. I’m in Reading and might not have the good news you’re hoping for. I was diagnosed this summer although it’s now clear I’ve had MS for over 20 years. I only finally got diagnosed when I finally got an MRI when I lost basically all my eye sight in a week, and again said about pain and mobility problems and pins and needles and bladder control and everything that I’ve been saying for years. The MRI scan showed all the lesions and yet they’ve said I can’t have access to an MS nurse yet and there’s no treatment. Ophthalmology are tearing their hair out because the lack of treatment means NY left optic nerve is completely dead and the right isn’t improving, I’m now considered blind and no one has any treatment options. There’s a great MS therapy centre but I can’t get to it because i can’t drive now I can’t see. It’s all a nightmare. And the GP just keeps apologising because they know how bad the service is here. Luckily my GP is awesome

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Hi Emmuk74, so sorry to hear of your issues after your diagnosis. I was diagnosed at about the same time as you but am not going through the problems with sight as you are and my Neuro and MS nurse are fantastic. I am no expert but is there anything your local authority can do about arranging transport? The MS therapy centre in Canterbury runs a minibus service, I believe, to help people to and from the centre, perhaps they do in Reading? I wish you all the best.

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Thanks for that thinking pops, I’ll get in touch with them and ask, it hadn’t occurred to me. Xx

19

I live in the UK and can’t fault the nhs care here. I have MS and my dad has motor neurone disease and we share a Neuro and Occupational Therapist and our care has been excellent. I don’t know if you pay for your care in Germany like we had to when living in South Africa. There treatment was given more quickly as you were paying for it. If you want to pay for treatment here you’ll be seen much faster and get more tests etc but I don’t believe I’d be better off than I am receiving my care on the nhs.

You already have a diagnosis, I wouldn’t be concerned about living here, in fact I’m so relieved I returned to the UK when I did, not that I moved here for that reason or even suspecting I’d ever become ill.

Min