Five carers spoke movingly about their experiences at the meeting at Portcullis House at the end of June when MPs backed the case put by Carers in Hertfordshire for the commissioning of specialist dementia nursing care in the county.
The meeting follows the closure of the Admiral Nurse pilot in Stevenage, which was run by Carers in Hertfordshire in partnership with Dementia UK, earlier this year due to lack of funding. Since its closure carers have fought for a vital specialist dementia nursing service to be commissioned across the whole county.
Specialist Dementia Nurses work with the whole family so that the person with dementia can continue to be cared for at home, reducing the need for costly residential care home or hospital admissions.
Carers Involvement Manager Roma Mills said that this was a cost-effective, quality model, which would give carers the continuing support they need as the illness progresses:
“Carers of people with dementia tell us they need timely access to clinical advice not just at the point of diagnosis but over the longer term. Too many are being left to cope on their own.”
Professor Stephen Dilworth, of Rickmansworth, said the case for specialist dementia nurses was a very convincing one for keeping people out of critical care.
The Middlesex University Professor of Cancer Biology looks after his wife, Moira, a former Imperial Cancer Research Fund scientist who has early onset Alzheimer’s disease.
He said: “Once we got the diagnosis it was a case of OK, go home, cope. The few thing we were referred to didn’t exist. As a university professor I thought I would have coped and I didn’t.”
Jan Burt, from Welwyn, gave up work in 2008 to become a full-time carer for her husband Victor who has Fronto-Temporal dementia. She said this ‘cruel’ illness had robbed them of all the things they had wanted to do when they retired.
She said: “If you’ve got cancer it shows. People know. They talk about it. They share their fears. I can’t talk about it with Victor, he doesn’t know the devastating effect his illness is having on his friends and family.”
Jan said Admiral Nurses provide the practical and emotional support to help people make the adjustment from being a husband/wife/daughter/son to a carer of a loved one with dementia.
Mark Prisk, MP for Hertford and Stortford, who hosted the meeting thanked the carers for sharing their personal experiences: “You are all doing work that would cost the nation hugely.”
Other MPs who attended were Oliver Heald, MP for North East Hertfordshire, Stephen McPartland, MP for Stevenage, Anne Main, MP for St Albans, and James Clappison, MP for Hertsmere, with apologies from other MPs in the county. The campaign also has the support of Lord Laming, a life peer in the House of Lords.
Join the campaign to commision specialist dementia nurses in Hertfordshire:
- Write to us at: Carers in Hertfordshire, The Red House, 119 Fore Street, Hertford SG14 1AX.
- Email or click on Have your say now! on the right of this page.
- Visit our Facebook/Twitter pages and make your views known.
You can also add your voice to a separate national campaign calling for more Government funds to recruit and retain Admiral Nurses. For more information visit www.change.org and search for Jan Inman.
Photo shows, from back left, carers Jan Burt, Winifred Goulden, Carers in Hertfordshire trustee Mike Ormerod. From front left, Carers in Hertfordshire CEO Michele Stokes, Carers Involvement Manager Roma Mills, carers Professor Stephen Dilworth and Albert Binns at Portcullis House