Working with others

The best possible support for carers is the best possible support for those they care for

A LIFE OF HER OWN

'We chat together, we laugh together

and sometimes we cry together'

"I opened my mouth to speak but nothing came out," says Hilda Duncalfe, recalling the first meeting she attended of the Expert Patient Group for people with long-term conditions.

"It was at my GP's surgery that I found out about the group. At the time I was at low ebb. A number of deaths in the family had affected me terribly, and I felt so within myself that I just used to burst into tears. Obviously I needed to talk."

Six months on, Hilda who copes with two brain tumours, arthritis and diabetes, has also learned to cope with her feelings: "Nowadays I feel much better in myself. There are many things I can't do, but there are many things I can do. I look forward feeling confident instead of looking back."

One thing Hilda and her carer husband Barry now look forward to confidently is his retirement in two years' time as an alarms system troubleshooter, especially since they bought Hilda a scooter on which she can "have a little tootle around feeling completely liberated".

At meetings in Shipley of the Expert Patient Group, led by Vera Camplin, she found mutual understanding. She says: "Joe Public will ask, 'How are you feeling?', and be half way down the road before you reply, but at group meetings we listen and understand. We chat together, we laugh together and sometimes we cry together."

Through the group, she met Stella Elson and Asma Begum from Carers' Resource and within weeks was helped to obtain a high rate disability allowance and a blue badge. "Stella is a lovely person and Asma is a little delight," declares Hilda.

With her scooter and blue badge, Hilda Duncalfe is enjoying a measure of independence in her life which seemed improbable in the dark days of last winter before she joined the Expert Patient Group and was supported by Carers' Resource.

Lesley Sterling-Baxter, Head of Patient Engagement, NHS Bradford and Airedale, says: "I'm delighted that the relationships developed by NHS Bradford and Airedale have had such a positive outcome for Hilda.

"This story shows how important it is for us to work with local support groups like the Expert Patient Support Group and Carers' Resource. Working in partnership with these groups helps us to meet the needs of local people."

This article is re-printed with the kind permission of Hilda and Carers' Resource (www.carersresource.org) and first appeared in their Newsletter 76 of May 2010.