Hi,
I am now 7 weeks post stroke. I wish I could say I was amazingly better but I am alive and grateful, as everyone on this site knows though it is incredibly hard everyday.
I have now completed all the out patient tests which are all clear and good, blood pressure, halter test, echo gram etc but that leaves no answers as to why I had the stroke . I am under Ashford St Peter’s Trust and try as I may I can’t get an appointment before January 2026 to discuss this. I was also told they would want to do more tests but I have to wait.
This is making me frustrated and anxious so I have been exploring seeing a consultant privately. It is far from straightforward but I thought for some peace of mind, I would try. I am far from a millionaire but this would be worth it to me to have 30 minutes with an expert, even if it just comes down to talking and no great answers.
So I was wondering has anyone seen or could recommend a consultant in the south east, London, Home Counties area, I am happy to travel, I live in north Surrey. If anyone has seen someone how did you get round sharing your nhs records with a private consultant? I have applied for a copy of all my results under freedom of information but it may take another 6 weeks. Is there any other way.
I would really appreciate any thoughts, help or advice on this. Wherever I get to I will share on the site in the hope it might help others.
Thank you all for reading and wishing you all strength and positivity wherever you are upto on this very hard journey.
Hi @Gilly23 I hope you manage to find a consultant who can help put your mind at rest. I haven’t tried so have no advice in that respect.
Sometimes they just can’t find a cause for a stroke & some people have to live with not knowing. Take reassurance from all your tests being ok. You’ll be on meds now too I assume so that will help keep the risk of another event happening down. I think it does make it harder not knowing why it happened but you may not get those answers.
Are copies of all your consultant letters etc on your NHS app? That might be a way of being able to show them to the private consultant.
Best wishes.
Ann
I’m sorry I have no recommendations but six months down the line I have only just seen anybody but as you all tests came back clear and the doctors said they can do nothing it’s all down to physio. Keep doing your physio cause from what I’ve seen there’s not always a black and white answer. Good luck with everything
Russ
Hello @Gilly23 - I am not sure if you have already seen a similar conversation we had on this forum a few months ago, but if you haven’t please see below link.
My view on private consultations remains the same as it was when I replied to the above post. and below is a summary. Several of the forum members replied sharing their views and experiences.
I hope this may help you decide the way forward for you.
Take care.
Thank you. I hadn’t seen the link. X
Hi @Gilly23,
I recently saw a private cardiologist after being told that my TIA was down to carotid atherosclerosis - if I have plaque there I wanted to know where else and whether I needed to worry about it. So while I can’t necessarily make a recommendation I can tell you about my experience (which was good, by the way).
Mine was a personal recommendation from a friend, but the health insurers have tools on their websites to help find consultants. BUPA are the most widely accepted so worth looking at theirs, though of course you can use this even if you are self-funding. The cardiologist that I saw had a process where I could fill in a survey online setting out my medical history and objectives, then he replied with a summary of what he could do to help and set out what it was likely to cost. In fact he was very open about costs through the whole process and actively tried to make sure I wasn’t spending more than I really needed to. Even so it was expensive, and as I was self funding I was whipping out my credit card at every visit.
There was a lengthy initial consultation where I went into greater depth about what had happened to me and he explained what he’d like to do. I was very happy with what he recommended, but I had gone in ready to walk away if I wasn’t happy. This isn’t the NHS, we have choices, and proceeding was going to cost a lot of money. It actually felt very strange to be seeing a health professional in the UK and acting like a prospective customer!
After that tests and scans were all booked in for one day, which was handy, with some further monitoring over the next two weeks. I was assigned a patient advocate who was responsible for dealing with any queries and making sure I was getting value for money. I received updates as test results came back, then a full written report at the end, along with a final consultation. The consultant also wrote to my GP several times to inform him what tests were being undertaken and what the results were.
So, not a recommendation, but maybe some things to look for when searching.
Something I forgot to mention: my consultant talked about reverse referral, referring patients back to the NHS if they needed a procedure that could be more cost effectively handled there. His practice is right next to a large hospital and he has close links there, apparently that would have helped in reverse referring if I’d needed it. Fortunately I didn’t, but maybe a factor for anyone else who is seeking a private consultant.
Hi. I am one amongst the many people on this forum who have never found a cause for their stroke (and I’m now 11 years down the line). I’m not sure whether a private consultant could shed any light on this. If you are looking for advice on how best to proceed, you could see if you can get a referral to someone at UCL at Queen Square. They are a leading authority in stroke care and I have taken part in research projects there and went on their 3 week Upper Limb Programme. I’m not sure whetherthey take consultant referrals. It might be worth a try.
Thank you for replying. That is good to hear and it certainly sounds like you bought yourself time and care. I have sent a message to someone and I will see what comes back. If I can at least have a review of where I am and them talk me through my medication and test results. I know I may end up with no answers. But for me that in itself is an answer which would help me mentally. Waiting until January seems wrong.
I hope all is going well for you. Wishing you all the best gor your future. Gill
Thank you Minnie. Sorry my replies are all over the place. I will look into UCL, it’s good to know what’s out there for us.
Wishing you the best of health going forward. Gill
Thanks Ann, that was a good idea re the letters. Hopefully I will get all the other information from the records office soon. It apparently comes on a CD disc, very old fashioned. Hopefully it works.
Hope you’re well and thank you again for your help and care.
Wow on a CD disc that really is old fashioned now but hopefully the consultant you see will be able to access it.
Hope you get the answers you are seeking or at least peace of mind.
Best wishes
Ann
Thanks Ann, it’s worth a try. Can’t take your money with you! And as the saying goes, your health is your wealth.
Gill x
Hi Gilly23, I’m 2yrs 7mths post stroke, I got no help from my hospital, in fact was discharged to my GP 4 days after my stroke. It took 8 mths to get my results from the MRI scan and no follow-ups fortunately my GP has been a godsend, she’s answered all my questions and if she didn’t know she found out. I’ve not looked for a private consultant, I live in West Norfolk and I would probably have to travel, to be perfectly honest I can’t be bothered, I’ve done a lot of reading online.
I hope you manage to find someone and they are able to put your mind at rest.
Take care and keep us all posted of your progress x
Hi Gilly23
I remember reading your post and could not help but wonder if you did get somewhere and got the help you were looking for?
All the best.