Dad had a stroke - first time using forum

[paperflowers]

Good morning all,

It’s the first time I’m posting here, and really I just want to share my story and see if I can connect with others who are experiencing similar.

I am also trying to navigate and deal with a medical negligence claim, a separate complaint to the 111 service and battle the local psychology service who have also let my Dad down - so any advice on this would be amazing.

My father had a stroke in 2023, we are extremely fortunate that he is still physically able but he has still been left with other life long cognitive injuries that impact him daily - reading, extreme fatigue, memory loss. It has also impacted him greatly emotionally and mentally.

Being the family member of a stroke survivor can sometimes feel very lonely. I have found that unless others have been through similar, it is very hard for them to understand.

As much as my partner offers a listening ear, he often does not know what to say and just does not fully understand, which isn’t his fault.

I am fortunate to have my Mum and brother, who are the only ones that truly understand. I have now moved out of my parents home, so my Mum is primary carer for my Dad.

It is a loss in way and a grief process, Dad is not the same as he was. I can also struggle with how it has impacted him emotionally and mentally, and so does my Mum particularly as his primary carer.

Financially, it had a huge impact and when it first happened I spent a least a month straight, day in day out, getting down their bills, applying for various benefits etc. It was a lot on my shoulders for me and my brother and this was a hugely difficult time.

Now, my brother and I are in touch with a medical negligence solicitors and we are awaiting to hear if we have a case of medical negligence due to delayed diagnosis caused by the 111 service - it is currently with an ambulance expert to review and we should hear soon.

They have also suggested we make a separate complaint to the ambulance/111 service as this will help the medical negligence case if we do have a claim. So I spent the evening a few nights ago typing a draft complaint, which fortunately my brother is helping me with.

In addition, I have also been drafting an email to our local NHS stroke psychology service as they have completely let Dad down.

He was referred to them, but unbeknown to us, his referral was rejected (without any assessment of my Dad). However, we were incorrectly told he was on a long wait list, we were never informed of the referral being rejected. I have since recently found out his referral was rejected, I have told them he needs specialist support, but after discussion and review by the psychologists they have refused to offer him specialist psychology support due to the time that has passed - despite this being their fault.

He is having therapy via the NHS but it is not specialist. His therapist is looking at more appropriate support for him and apparently one of the psychologists will be working with them to get him the right support - at the moment I don’t know what this is or when.

Dad’s early discharge support was extremely limited - 6 weeks of SLT and OT support, then we have just been completely and utterly left on our own.

The battling for the right support for my Dad, and claims we are making re medical negligence is so hard going and is re-traumatising having to go through again and again what happened.

I feel completely let down by the services who are meant to help, and had the 111 service have arranged an ambulance straight away Dad might not have the brain injuries he has now.

Has anyone had any luck with medical negligence/111 complaint/and getting the right psychology support?

I have looked into stroke advocacy services but can’t seem to find anything online.

This was a long one, sorry!

[IreneFC]

@paperflowers My heart goes out to you all. Stroke is a long long process. No one can say anything that will make you feel better as nothing will. I am stroke survivor I am on the other end from you. NHS expect too much of families re care as we all have our own lives and own children or work. But NHS expect you to drop everything. I wish you luck for the future. Stroke is trial and error. What works for someone may not for you. Thats why I just do my own thing. God bless you all.

[Janetb]

Stroke can be so cruel to the family as well as to the patient. You can use the search function on this site to find topics that my interest and inform you.

There are a couple of groups that meet via zoom, I think one is for carers. They may come here with an invite for you.

If your dad can travel there may be a group local to him which could offer support and friendship.

Cognitive effects are very common - stroke has a wide spectrum of injuries. There are many people here with similar injuries especially fatigue which seems to be universal.

Best wishes to you and your family.

Janet

[ManjiB]

@paperflowers - welcome to the community. I can only sympathise with you for all you and your family are going through. Other than say as a carer for a stroke survivor who also did not get the level of support in a timely manner, there is nothing else I can offer as we did not go down the route of making claims. Our time has been taken up in just trying to provide the best care we can with our own limited resources and knowledge. This forum has been helpful and supportive and for that we are grateful.

We wish you all the best and hopefully you will get the help and support you require.

Namaste|

[Anna_Moderator]

Hi @paperflowers

Welcome to the community, I’m sorry to hear about your dads stroke and all that you’re going through as a family, it sounds like there is a lot going on for you all.

My first thought would be to check if you have given our Stroke Support Helpline:0303 3033 100? If you haven’t already, I would advise giving them a call as they may be able to help point you in the right direction regarding advocacy services and also what support is available to your local area.

I’m sure there will be other members along to offer their advise on this and I hope you’ll find this community helpful.

If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.

Anna

[Mrs5K]

@paperflowers hi & welcome to the community. Sorry to hear of all your struggles since your dad’s stroke.

Medical negligence claims are a minefield & really require expert advice which I note yiu have sought. I believe you have to prove that the outcome wojld have been different if they had acted quicker etc. That’s where my knowledge ends.

Stroke aftercare is very hit & miss. some people get a lot others get none. A postcode lottery as they say.

I echo what @Anna_Moderator says about calling the Stroke Association helpline. They will be able to guide you better.

Sending my best wishes to you all.

Ann

[paperflowers]

Hi Irene,

Thank you for taking the time to read and your reply. I am sorry to hear you have experienced a stroke and I am wishing you all the best in your recovery.

You are right, what works for some doesn’t work for others and it is finding what works for you x

[paperflowers]

Hi Janet,

Thank you for letting me know about the search function, that’s helpful.

Zoom sounds good and will be good for my Mum and I. Thank you again x

[paperflowers]

Thank you for taking the time to read and respond.

Support for carers is limited, though I have found a few resources with some time and research. I’m glad this forum has been helpful for you and I am wishing you and your family all the best also x

[paperflowers]

Thank you very much Anna

[paperflowers]

Hi there, thank you for your reply.

Yes, it seems you have to one identify and prove negligence, then causation. A post code lottery for sure!

x

[Rups]

Hmmmm, tricky, tricky, tricky. I know of several survivors who have attempted to go down this route and it will be challenging, methinks. I can’t offer any advice on such things, despite having a salt n vinegar crisp on my shoulder, regarding my misdiagnosis and eventual paramedic handling of the stroke I had. I’ve had to put all that in the past now. Emotionally though, for your dad, I would encourage him to look into Mindfullness and even DBT (Dialectical Behavioural Therapy), both of which I have come to lean on for my own emotional needs post stroke. These can be guided by friends or relatives or done on one’s own. Your dad would need to be a willing participant and open to it though, otherwise an SRRI might be suitable in the short term. Psychology support through the NHS is not easy from my own experience. I have dialled 111 option 2 and was put on an online CBT set of sessions, but the sessions provided nothing particularly new for me and because they were group orientated, I felt my own specific needs were not, entirely, addressed.