Young stroke survivors need better aftercare

29 October 2019

I know I've praised the numerous medical professionals who have helped me throughout this stroke recovery process and I will be eternally grateful for the quick thinking paramedics, Resus staff and the Acute stroke unit nurses to who have helped me feel a little less terrified and scared for my life but I have to admit that I also feel let down and disappointed with some of the care and treatment (or lack of) that I've received and I think this needs to be addressed so that other young stroke survivors don't have to go through the same. 

Firstly, I need to stress how much I understand that the NHS is overstretched, short-staffed and at breaking point; I appreciate the fact that I am receiving medical care for free and I acknowledge the fact that there are others in the world who don't receive half, if any of the care that I have however, that doesn't deter from the fact that there is room for improvement in the way care is delivered and treatment is organised. I feel, as a young stroke survivor that I have been withheld information, somewhat patronised and left to fend for myself because, as I have been told many times by Dr's and Nurses I have "age and luck on my side". Although this is true and my age and twisted fortune has allowed me to make a strong and quick recovery, there are still many deficits from my stroke that aren't being recognised and not receiving any advice for and it's stressful. 

Let's start from the very beginning, after being transferred to Acute Stroke Unit in North Staffs Hospital at around 9pm on the night of my stroke I was settled in and soon told that it was time for my Mum to leave. Being a deeply concerned and worried mother she tried to subtly ask if I would be okay enough throughout the night to leave (to put it bluntly she was asking what the chances are of me popping it whilst she was gone) and we all knew it. I know that nurses can't make promises and misinform patients and families but I was sitting bolt upright in my bead, sharing my wonky little face on Instagram thinking that I was over the worst. No one told me how critical the first 24 hours are post stroke, no one told me that I was still high fact, no one told me what a bloody stroke even was. The nurse turned to my Mum, stoney faced and said, in monotone "we hope for the best but cannot make any predictions at this point", it reads as a pretty reasonable response, they want me to live but they can't promise it; but the tone, the lack of any reassurance or empathy terrified me and I spent that night alone, wondering if I was going to survive the night. 

The next morning a consultant and physiotherapist marched into my room, they completed the various tests to ascertain the extent of my damage and I was then made to walk, get dressed and drink - I was grateful for the consultant's not bullshit manner, she told me that the stroke was down to the pill and I should get the coil. I was kept in for the most of the day pending another CT scan, when she came back the results had confirmed my stroke, she spoke to me and My Mum and told me that I could go back to work in two weeks, I was to take Asparin followed by Clopidogrel and was to get on with my life. My Mum asked if there would be any emotional or behavioural affects from the stroke, the consultant said no, discharged me and sauntered off never to be seen again. Three months later I was called to attend a consultation with another stroke consultant, he went through things that had happened leading up to the stroke and told us that it seemed as though it was "just one of those things" and tough shit, he advised that often it is better to not have a cause for  a stroke as statistically "those without specific causes are less likely to have another" this comforted and I was pretty happy as I skipped off for some routine blood tests (that should have been completed three months prior). A month later I received a call from the same consultant's secretary and advised that "the cause for my stroke had been found" and I needed to come in ASAP; this is when I was diagnosed with Antiphosphilipid Syndrome (APS), shown the NHS page for it, told I was to go on Warfarin and that I could take the mini pill and sent on my merry little way to await a referral to a Haematologist. The Warfarin clinic referral came through first, I attended my first appointment, had my INR checked, was told what my dose and target was and once again sent on my with no information about APS. 

Some months later I received a letter inviting me to attend an appointment at "the medical clinic of..." it included to Dr's name but not what it was for and the department wasn't included. It transpired that this appointment was for the Stroke Clinic back in Crewe and I had been transferred, the Dr was lovely, not much older than myself and very keen to do some more investigations. I asked a lot of questions about my APS diagnosis, concerns that I had with my veins as well as contraception advice, I was told that I needed to speak to my Haematologist about the APS and ask my GP about the pill because "most of the Dr's patients are over 60" and she "hadn't been asked about contraception for". Two weeks later I attended a Saline Contrast Echocardiogram where a hole in my heart was discovered; the Cardiologist said that he reckons this was the cause for the stroke and not the Antiphosphilid Syndrome but I'd find out more at my next stroke consultation...whenever that will be. 

As stated above, I understand that the NHS is overstretched and the 3-4 month wait between various appointments is often unavoidable and could arguably indicate that I am not in any grave danger...but I'm not being told this. I'm attending these appointments, receiving more and more bad news and then being sent away to deal with it because I'm young, because I'm lucky. But what these people don't understand, or have the time or resources to understand is the detrimental effect that this is having on my quality of life. I have been diagnosed with a syndrome that I know nothing about other than what I've googled, I have to seek advice from people online, books and medical journals to look for reassurance or if I should be concerned. I've had to take time off work for feeling too unwell and panicked to attend, I've called 111 thinking I was having a heart attack, I've been to my GP numerous times about APS only to be shown the NHS page for it and be told to "just wait" for my consultation, no one is able to answer my contraception  queries, I'm being offered anti-depressants left right and centre when the route of the problem is that I'm being left for months on end not having a clue what's going on with me and being expected to crack on...because I'm young. 

I was discharged from the community stroke team 12 weeks post stroke so no longer have access to CBT and counselling and would have to make a general referral via my GP - this would probably take as long as my consultations to come through. I'm at a point now where anxiety can very quickly take hold when I feel unwell and the more bad news I receive (with minimal information) means that I still don't know what's a symptom of something serious and what isn't which immediately makes me assume the worst and worry. My main source of comfort is my local pharmacist, when I feel worried I ask him to check my blood pressure, I think he knows now that something has happened when I attend and he gives me practical advice and a bit of comfort. More recently I went because I felt lethargic and the veins on my hards were raised and felt painful....turns out my blood pressure was low and I needed some water, the poor bloke's face drops when I walk in and I'm sure he thinks I'm mental. 

I don't need drugs, I don't counselling and I don't need therapy; I need to be informed, advised and guided. It's unfair to diagnose someone with a syndrome and not offer any consultation for six months, this would have an impact on anyone's mental health and quality of life. I feel as though I have been patronised and uninformed because I'm young and 'carefree' but I'm not, I'm a mother, a professional and a grown woman - I need to know what my options are, what my risks and when to be concerned not just left to get on with it because of my age. Based on first appearances, it looks like I have "bounced back" from the stroke but I still have a paralysed left eyelid, my fingertips are still dead, there are tendons or ligaments in my neck that don't work and don't know if they ever will one has listened. 

It's hard having anxious thoughts when the solution and cause is blindingly obvious and entirely out of my control and I'm sure I'm not the only stroke survivor feeling this way or, that is treatment (or lack of) only applies to young stroke survivors but the resounding message I've received from multiple professionals is "you're young, you'll be fine" yet the test results are showing that I am in fact not fine. Stroke survivors (and anyone suffering with these issues) need more practical and medical guidance, we need to be spoken to frankly and treated intelligently rather than dismissed and offered anti-depressants and I'm not sure how we go about finding this. 


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