Nisba Ahmed is your new Patient Voice Representative. Nisba had a stroke in 2011, and together with fellow stroke survivor James Redgate, is now working alongside healthcare leaders and experts to oversee and help deliver the improvements in stroke care set out in their the NHS Long Term Plan for England.

What is a Patient Voice Representative (PVR)?

"As Patient Voice Representatives, James and I use our lived experience of stroke to inform and influence the work of NHS England services in a national context. 

"We attend the Stroke Delivery Board meetings, chaired by Juliet, the Stroke Association’s Chief Executive, and the Cardiovascular and Respiratory Programme Board meetings. We hear about projects to improve stroke care and services, and have the opportunity to voice our thoughts. For example, the NHS are piloting a new rehabilitation programme across England, so we plan to share stroke survivor experiences to help them develop this.

Why did you want to become a PVR?

"I had a stroke when I was 37 weeks pregnant. I now have half vision in each eye and no peripheral vision on the left side (hemianopia). This means I often bump into things or don't see things that are there on the left side, unless I swivel that way. My left side is also weaker and I’ve had emotional and cognitive problems.

"But I didn't get any stroke rehabilitation or the mental health support and relied on my mum to help me look after my son, who was born a few days after my stroke.

I've adapted to my situation but I've had to work hard to get to this stage and don’t want other people to have to go through the same experience I did. I was looking out for opportunities to use my lived experience to benefit others and saw the Patient Voice Representative advert on the Stroke Association's website. I wanted to get involved on a national scale to influence and improve services and to make a difference.

Have you done any campaigning before?

"I do talks and raise awareness of stroke and the FAST signs, particularly in black, Asian and minority ethnic communities in Bristol, my local area, as well as with young people in Lancashire where I'm originally from.

"I'm also a Commissioning Officer for the local authority – I commission services based on the community’s needs and have supported local stroke groups in the past.

Why is it important for people affected by stroke to be on these boards?

"We've had experience of stroke so we know how debilitating it can be and how it can affect you physically and psychologically. It's really important to have those experiences reflected on a national scale and I hope our involvement will help to influence and improve the quality of care for stroke survivors, carers and their families."

Timeline:

January 2019 - NHS Long Term Plan announced.

February 2019 - Stroke Delivery Board and the CVD and Respiratory Programme Board established.  

April 2019 – The Stroke Association, British Heart Foundation and British Lung Foundation collaborate to get patient representation on the boards.

August 2019 - Six PVRs recruited by the three charities, including Nisba Ahmed and James Redgate, who represent people affected by stroke.

October 2019 – Nisba and James attend their first board meetings.

NHS terms explained:

NHS Long Term Plan - Sets out NHS England’s priorities for healthcare, including stroke, over the next 10 years.

Stroke Delivery Board - Oversees the improvements to stroke treatment and care in England promised in the Long Term Plan.

Cardiovascular (CVD) and Respiratory Programme Board – Oversees all the improvements promised in the Long Term Plan for stroke, cardiac and respiratory conditions.

Find out how you can get involved in campaigning around the UK.

Stroke News magazine

This article is featured in the Spring 2020 edition of our magazine, Stroke News. Subscribe to our future editions available in print, on audio CD, or via email.

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