I just discovered that UCL hospital in London has a specialist team with expertise in the autonomic nervous system who take (NHS) referrals from across the whole of the UK. It’s a ‘tertiary’ unit, which apparently means referrals have to be on the advice of a consultant. Dad is currently being seen by a neurologist with a special interest in movement disorders, but I am wondering whether it would be worth trying to have a conversation with these guys.
Their website states that the unit “enables people with autonomic symptoms, some of which are multiple and complex, to successfully manage their daily lives”, and MSA is listed as one of the conditions they treat.
Has anybody been referred to UCL, and do you think it could be helpful? I don’t want to just needlessly create more stress for dad….
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SarahHes
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Hello Sarah. I have to say this is the first time I’ve heard about this unit - it sounds very interesting. Perhaps it may be worth talking to your local MSA Trust nurse to see if she has heard of the unit. Take care, Ian
Coincidentally I saw that only a few days ago when doing some random-ish internet searches including MSA
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You have nothing to loose by having a chat with one of their team and you could tell them which autonomic related symptoms your dad has and which trouble him the most.
It looks like they take referrals from all over the UK so probably have a system to mitigate long travel distances if you are not near London.
Here's the link for others who might be interested;
I'm going to print off a couple of relevant pages and show them to my consultant. Let us know how you get on if you take this further and I'll do the same.
I will. We’re in Yorkshire, so getting to London would be a bit of a palaver, and stressful for Dad. But I am going to see if it is possible to talk to them and maybe start off with a video / telephone consultation…..
I am under UCL and I’m also in a control group being monitored for progression of the illness against those receiving a new drug , which could slow it down .They give me treatment for any new symptoms and they are a specialist in our condition. I-have been told I have deteriorated quite noticeably since my first review ,this can be the nature of the MSA . I have nothing to compare it to for you as I was initially referred to them.
If his symptoms are being managed then that is what I’m told there is all they can do for us. Perhaps ask the first consultant of any extra benefits for your Dad.The first consultant may be able to ask for advice from them rather than you travel direct.
Good luck to you both on this journey- enjoy now rather than think too far ahead .
Thank you so much for your reply. Dad is still in the relatively early stages, I think, despite the fact that he first started developing symptoms about five years ago now. I’m not completely ruling out his diagnosis changing at some point - all we really know is that his DAT scan showed clear degeneration consistent with some kind of Parkinsonian syndrome, and he has a range of issues arising from autonomic dysfunction, which are making his life more and more difficult. I know that he finds the problems with exhaustion, balance, plummeting blood pressure and digestion far more troubling than the more typical Parkinson’s type symptoms, and I just want to be sure that everything possible is being done to get them under control (insofar as that is possible).
I think you are absolutely right - the best solution might be to see if his consultant can get advice from them. I’ll do what I can to make that happen. And yes, I try to stay focused on making the most of right now, when he does still have good days, rather than obsessing about the future. But I would hate to think of him missing out on some treatment or advice that could make his good days a bit more frequent - or last a bit longer.
Thanks again, and the very best of luck right back to you. I hope you have plenty of good days ahead. Xx
Hi Sarah, Your Dad's situation is very similar to my husband. His blood pressure issues started about 5 years ago. He has several other autonomic symptoms and mild parkinsonism, positive DatScan. His diagnosis is MSA-P but his progression has been slow and he is still early stage. He has all the symptoms you described - no stamina, balance problems, nausea, constipation, and severe blood pressure fluctuations. There is still a slight possibility that this is PD. His Movement Disorder Specialist doesn't seem to think that the label is important as she says PD with prominent autonomic dysfunction progresses more like MSA. I'm trying to focus on the slowness and the hope that it continues.
Yes. That sounds as if your husband is very much in the same boat as my dad. I too try to focus on the fairly gradual progression - I just wish there were something we could do to keep his blood pressure from dropping so catastrophically and completely wiping him out. But I am thankful that - so far, touch wood - progress has been slow. Xx
Dear Sarah I know you want to prepare for all eventualities and it is hard to get the balance . I admit I still research , it’s hard not too .Do what you think is right and what he wants , we all want the right treatment at the right time , but we are all so different. Seek help , advise , support when you notice things changing, incase there could be something to help.
I would reiterate what Pat has said. My mother was on the Exenatide trial at UCL and is seen by the neurologists there. They are amazing people and hopefully they will find effective treatments for MSA but right now there is very little they can do and I don’t think the standard of care would differ very much from anywhere else in the U.K. My mother has been prescribed medicine for blood pressure, dizziness, infections etc and has been strapped into a chair and spun 360 degrees (!!!) but nothing has made a dramatic difference to her quality of life. The most valuable advice has I think been around adaptations to her home to make living more manageable eg different seating, raising the bed, raising toilet seats etc. And this has come from occupational health therapists rather than UCL. Good luck and take care xxxxxx
Thanks, that’s really helpful and clear. I think I am in the ‘wild floundering’ phase of adapting to a loved one’s difficult diagnosis - I’m conscious that I’m clutching at straws a bit. Xx
My husband was referred to Professor Christopher Matthias (patron of MSA Trust) at Queens Square with autonomic symptoms, probably in 2012. It was not a happy experience and Matthias failed to diagnose MSA, although our GP did - 2 years later. Subsequently, his care was overseen by a neurologist at the Great Western Hospital, until he died in 2016.
If you already have a diagnosis, I’m not sure what value the NHNN would add, but as others have said, you have nothing to lose by asking for a referral. We may just have been unlucky.
I would just add, expect a long wait for the autonomics team. I am already a UCLH/NNH patient for MSA and was referred to autonomics in June. My appointment is in December so they are obviously and understandably in high demand.
The autonomic unit is well known to us and they offer an excellent service supporting many people living with MSA, particularly those with complex blood pressure issues.
A Doctor needs to refer someone there for assessment and ongoing advice. As they are unique in UK, the waiting list can be very long.
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