Does anybody feel they are left high and dry? It’s 14 months since my husbands haemmorhagic stroke and apart from a brief review at 6 months we have no contact with anybody in the NHS. I find this very strange because his life has changed completely and I think he is getting worse to be honest. He is mainly in a wheelchair but uses a quadstick in the house. His right hand has no improvement at all and even though I put a splint on it at night it is still claw like. He massages it in the day and we try hand exercises when we have time. His speech is a lot worse but when I managed to get a speech therapist to come out she said she could understand him which implied there wasn’t a problem. His memory is poor and he gets very depressed. He is now very bent over and he seems to have aged 10 years. We try to be positive but he still needs loads of help with everything as he only has one good hand.
We have seen the GP many months ago but he was no help and just gave him some happy pills. What we really want is to see a Stroke specialist - can we ask for that? We have so many questions. I don’t feel we are much further forward than just after the Stroke.
See if your local hospital has a stroke team or geriatric team, the latter should have a stroke consultant there. I, at the age of 44, would go to my local hospital’s geriatric department and get the opportunity to chat with my stroke consultant. This happened over a period of eight months, only a couple of appointments but I’m sure I could have booked more myself.
It does feel like you simply get left to fend for yourself.
Was your husband on a neurology ward? The day after I was discharged I was assigned a stroke nurse who did 2 follow up calls with me and then I was told I had her number should I need any ‘practical support’. I have rang her a couple of times since (I am 13 weeks in). If you are unsure could you call the ward he was on or check any correspondence from hospital? I know each hospital will be different but my correspondence had ‘important numbers’ on.
Keep on at your GP too. We feel like a burden but these people are here to help and won’t know how much we are struggling if we do not ask. This is what I am pushing myself to do at the minute rather than just worry and make myself worse. I find chasing up results the worst part. Just a constant waiting game. I am just trying to have patience and relax but it is excruciating at times.
It is a long time since I had my stroke but I had help more recently by a community Nursing and Therapy team an NHS service who come to your home. They have an occupational therapist among other services . At least they could come to your home and see your situation and signpost you to other services
It does sound like you should have received more support than you have. We do hear about it being a postcode lottery in regards to services but that doesn’t mean you can’t ask for more help. As others have said, try speaking with your GP or calling the ward that your husband was a patient on - they may be able to help. Also, you could give our Stroke Support Helpline:0303 3033 100 a call. They will be able to have a look at what support is available in your area.
Sadly this is quite normal following a stroke and things don’t seem to have improved since my hemorrhagic stroke 8 years ago. After care following a stroke is definitely a post code lottery. We are in Kent and do have a Neuro Rehab Team who include Occupational Therapists and Neuro Physiotherapists and this was useful in the early days of my recovery but no one told us about this service and we stumbled across this service by luck. Maybe you have something like this local to you.
I can see you have already received some tips and advice and I hope that you get some help for your husband soon.
@Trisha2 it does sound like you should have received more support however this does tend to be a bit of a postcode lottery. If you have a contact for the stroke team at the hospital I would try getting in touch with them or go through the Hospital switchboard if necessary. I would also budget your GP and you absolutely can ask for a referral into the stroke team and I would advise that you do so. I would also ask the GP to do any other referrals that you think might be beneficial for your husband.
@Trisha2 Yes I was left high and dry. I think most stroke survivors are. You can ask for a stroke specialist, whether you get one is another story. I wish you and your husband well for the future. I don’t even talk to my GP anymore about my stroke as he is not interested. i think they think, well you survived, but its the stroke survivors that need the help. I got more help from the forum.
Try asking at your local council for the Occupational Therapy team to call out for an assessment, if they have one. You could also check if there is Community Stroke & Neuro Team under your foundation trust that you can contact. You can look this up on the internet. I have been under my local team and just been discharged from them with the knowledge I can contact them any time if I feel I need them. They can also provide your husband with aids if he needs them to make life easier. I hope you can get your husband and yourself the help you both so desperately need.
I don’t even talk to my GP anymore about my stroke as he is not interested. i think they think, well you survived, but its the stroke survivors that need the help.