In our second blog of the week, Shani Shamah, who has had a stroke and now works as an Engagement and Involvement Specialist and a Stroke Advocate and Counsellor from London, describes her experiences and her current involvement in research related activities.

Opening the door to the future…

My life is still a work in progress. By “Work in Progress”, I mean that I will get there a little at a time, not all at once. My story is one of sheer grit and determination. Just as every stroke and every person are different, so too is my story, but hey-ho I’m still moving on as best as I can. I may not be there yet, but I am closer today than I was yesterday. As I close the door to the past, I open the door to the future, and I have taken a deep breath to move on and start a new chapter in my life. It has been tough at times, but I have learnt to embrace the changes, I have achieved so much. It has been a long and hard battle and journey.

Now, I don’t worry anymore that my life has been turned upside down.

Trust me, there is life-after a stroke.

Remember you had a life before your stroke and there is certainly life after a stroke, so get on with it and move on. You should accept your ‘struggles’, as without them you wouldn’t have stumbled upon your new ‘strengths’. However, the smile on my face doesn’t mean my life is perfect. It means that I appreciate what I have, I am still embracing the new me, and learning to love myself again.

A blessing?

I look at this stroke as a blessing instead of a curse and think of all the things I have gained and achieved in the process, instead of all the things that I’ve lost. I’m no longer content with the new me, but I’m happy with it. I still have my bad days, but my good days are starting to far outweigh them. I’m alive instead of questioning “why me?” Nothing is permanent. I don’t stress myself too much because no matter how bad the situation is, it will change. Tough situations build strong people.

I still laugh about my days in rehab in hospital and being a real ‘bugger’ on the ward towards the multi-disciplinary team or better still I was just plain non-compliant. Looking back, I now realise that I was just rebelling as it came down to a lack of communication and not being listened to. It was just a total lack of patient centric care. A lack of understanding that there is a person inside the body that needs to be heard and listened to.

How do you go about change?

So how do you go about change? I did some research and came up with ‘service user’ or ‘expert by experience’ involvement or PPI (Public Patient Involvement). The Google page actually said, “Get involved”.

Patient and public participation is important because it helps us to improve all aspects of health care, including patient safety, patient experience and health outcomes – giving people the power to live healthier lives”.

Fab! Now I thought I could make the stroke patient experience better so, I got involved. Ha! No chance. The NHS is like trying to turn a super-tanker.

Having said that, service user involvement continues to develop as a central policy agenda in health care. The patient voice is seen as relevant, informative and should drive service improvement. Developing more innovative methods beyond patient feedback and complaints should help revolutionize the practice of involvement into a collaborative partnership, facilitating the development of proactive relationships between the health and social care profession, patients and the public.

    Shani Shamah, Engagement & Involvement Specialist, Stroke Advocate and Counsellor.