May 19 2013 Latest news:
Saturday, March 23, 2013
Above all other days, Sylvia Platten looks forward to Monday.
It’s the day she visits the Priscilla Bacon Centre in Norwich, just as she has for the past seven years, since being diagnosed with multi systems atrophy.
At 79, the degenerative neurological condition affects her mobility and causes her constant pain.
Every week she is picked up by the ambulance service from the Hellesdon home she shares with Michael, her husband of 54 years, and taken to the Unthank Road site for treatment.
She said: “It’s very complex and few people have my condition. There’s very little known about the illness itself.
“Slowly things are getting worse, which is to be expected. It restricts my movement and means I’m in a lot of pain.”
The medicines and treatments she receives at the centre help her to manage her condition and its symptoms.
“I look forward to coming every week. It’s the highlight of my week,” said Mrs Platten. “The staff work so hard, but they are all so pleasant and they make you feel so important.
“I wish I could come in more but I’m lucky to be able to come one day a week.”
Up to 60 people a week use the Priscilla Bacon Centre, all with life-limiting or progressive illnesses.
They include cancer, advanced heart, neurological and respiratory problems, and conditions such as motor neurone disease and Alzheimer’s.
The services offered by Norfolk Community Health and Care NHS Trust (NCH&C), which runs the facility, include 16 inpatient beds at Priscilla Bacon Lodge, outpatient clinics, day treatments at the Rowan Day Centre and care within patients’ own homes or nursing homes, backed by a network of doctors, nurses, and more than 100 volunteers.
Staff at the centre also administer treatments such as blood transfusions and intravenous therapies. But effective palliative care is not just about delivering the medication that treats symptoms, but offering the patient care to meet emotional, social and spiritual needs.
While at the centre, Mrs Platten undergoes a range of treatments – physiotherapy to exercise and loosen her joints, reflexology to soothe cramps in her feet, with chiropodists and other personal treatments also available on rotation.
That social aspect is almost as important – it’s a chance for her to spend time with others going through similar experiences. Having been coming for seven years, she has built friendships with many of the other patients.
At lunchtime, a trolley funded by the centre’s support group comes around for patients to enjoy a small glass of wine or beer – another way to improve their quality of life.
In the afternoon, Mrs Platten joins some of the other patients and staff for “a good old singalong” featuring songs from years ago and tunes from the shows.
Support is also available from the centre chaplain, and social workers help with advice on financial issues and benefits for patients concerned about their families when they are gone.
Mrs Platten and her husband also receive support at home, in the shape of carers visiting twice a day – morning and night – and for four hours one day a week, allowing Mr Platten a little time to himself.
“It’s too much for one person to do,” said Mrs Platten. “Having carers means there’s someone to look after me while my husband goes to do his things.
“[The condition] can change so much from day to day – one day can be not too bad and then the next I can’t get out of bed.
“It’s very difficult making plans.”
For the most part, Mrs Platten’s condition is manageable but four times in the past year she has had to be taken into hospital urgently.
“It was so they could stabilise me,” she explained. “And, putting it crudely, bring me back to life.”
The access to emergency treatment when necessary has meant that Mrs Platten is able to spend as much time at home as possible, where she feels most comfortable, assisted by the home carers.
Mr Platten said: “It means that Sylvia can keep at home, otherwise she would be in a nursing home. It’s important to keep her at home as long as possible.
“It does get very tiring – sometimes I’m exhausted by it. For 21 hours a day I’m the sole support for Sylvia, and she does need a lot of personal help.”
He added: “If it wasn’t for them I wouldn’t have Sylvia with me here today.”
Making sure that patients’ needs are met in the most seamless way, especially where there may be more than one care provider or location, was one of the central pledges made at a care summit in Norwich earlier this month.
Better collaboration would lead to improved service for the patient, providers said, and agreed to share information more effectively and bring in a single file for each patient.
Such a seemingly simple change can make a huge difference for patients, said Christine Hawkins, modern matron at Priscilla Bacon Lodge, especially when it comes to sensitive discussions about where a patient would like to be towards the end of their treatment.
“To have that conversation with a number of health professionals is very difficult for the patient.”
She added: “We have really good end-of-life care services in Norfolk, but what was identified is that we need to work together in a more joined-up way.”
It is a pressing question for Norfolk: each year 9,000 people in Norfolk die, with an estimated 7,895 of them requiring a form of end-of-life care, from physical treatment to emotional family support – and, with an ageing population, the numbers are set to rise.
Michael Scott, chief executive of NCH&C, said the trust pledged “to do whatever it can to further the collective aim to continue to improve care, choice and dignity for people at the end of their lives.”
He said quality services and patient choice were central to the trust’s future plans, including offering patients the opportunity to stay in their own homes.
“I think we would all agree, there is always much more we can do to work even closer together to ensure those choices can be honoured, and collaborative events such as the conference are a really good first step towards our achieving this,” added Mr Scott.
Nearly 3,000 people have supported a Facebook campaign demanding safety improvements on the A47 near Dereham set up after the latest fatal crash.
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