I’m Tara and I’m a member of the Patient Voices Matter group.

I live in Bristol with my husband. We have two daughters, now all grown up and I have a wonderful grandson who is 16 months old.

Service user

I had breast cancer at age of 39, when my girls were small. This led me to become involved with what was called service user’s involvement, an attempt by patients and clinicians to influence good practice and policies for cancer services.

In those early days I co-founded the first ‘user involvement group’ for our Regional NHS Cancer Network (Avon, Somerset & Wiltshire Cancer Network) and worked with organisations like Cancer Alliance as a Trustee. These were mainly concerned with giving patients and carers a voice and influence. But sadly these structures and organisations are no longer around. I have since been involved nationally and locally in the patient and public involvement mainly around NHS and NHS research bodies.

For 20 years I served on mainly NHS commissioning bodies as a non-executive director. My last role was on a Clinical Commissioning Group in Bristol.

Fight ageism

I am now retired but still involved in a range of activities including a role as a trustee on Bristol Older People’s Forum. It attracts 3,500 members and works to support older people and fight ageism. We are involved in many exciting projects at present, including on aspects of health and wellbeing.

Since my breast cancer, I have had many more illnesses including a facial nerve neuroma, which is a benign brain tumour. Although removed with surgery it has left me with a number of disabilities including a facial palsy and total deafness in my left ear.

I have other health conditions, partly due to my family history and ethnicity and that, combined with getting older, means I spend quite a lot of time trying to get decent healthcare for my needs but also for others too.

Impact

I have been passionate about the NHS, having been involved at strategic levels for many years. That’s why I decided to get involved with the Patients Association’s call to apply for the lived experience advisory panel. I wanted to have more impact as a user of health services for routine concerns (such as accessibility, communications, and not waiting long for diagnosis and treatment) which have been around for years.

I also wanted to share my experience as a woman from an Asian background and work with others with lived experiences – some similar and some different.

Patient Voices Matter has been to date the most inclusive of groups with ‘lived experiences’ that I have ever been involved with. It is a refreshing group that tells it like it is!  There are occasions when it has been challenging. The group has really formed and there is a lot of commonalities in our experiences. The differences are often to do with how much harder it is for some of our group to get the basic support needed from the health and social care sector.

Nurturing

I have learnt a lot from our sharing and listening to group members talking about the issues that concern them every day dealing with health professionals and organisations. I am very proud to be on this group and feel there is a lot of nurturing and support for each other. The most important thing for me is to constantly ask - How are we helping the Patients Association make a difference in the most practical way that will bring about systemic changes and so help us get the best health service we all deserve?

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