FEATURE: Looking at the vital work of St Nicholas Hospice in Hospice Care Week
But medical breakthroughs mean people once given just a few months to live can now survive for years.
Living with dying – and making that life as good as possible – has become the hospice’s watchword.
And when it ends they want to ensure every patient can spend their final days in the place they call home.
Hospice Care Week, which runs from October 5 to 11, highlights how the whole hospice movement helps those facing life-limiting illness, death and bereavement.
This year the theme is connecting care. And for those who work at St Nicholas it could not be more apt.
Sharing expertise with others is one of the key ways it helps dying patients to stay in familiar surroundings rather than hospital.
A wide-ranging education programme is making sure the right advice, support and training is available.
That might be teaching a care home nurse to use a syringe pump, providing a 24-hour helpline, or running courses to give carers and families the confidence to look after patients at home.
Spreading knowledge is becoming ever more crucial to stretch the resources of the hospice as far as possible.
Its wide-ranging services already cost £11,000 a day to run, and with limited NSH funding around three-quarters of that massive bill is met from fund-raising, legacies and donations.
To most people, the hospice is the building behind West Suffolk Hospital, in Bury St Edmunds, which is the nerve centre of its operations.
It houses the in-patient beds, day hospice, and a range of other services – but the vast majority of its work happens in the community.
“We are much more than bricks and mortar,” says Pippa Wilding, who has been head of education at St Nicholas for three years.
She oversees training for the hospice’s 160 staff and 600 volunteers as well as for the local community.
“Most people want to be cared for or die in their own home,” she says.
“To enable that to happen we need to work with lots of people to give them the skills required.
“That could include healthcare professionals, chaplains, or funeral directors.”
“We are doing a lot of work with care homes on end of life care.
“There are 47 homes, with 1,900 beds, in our area so a lot of people are being looked after in that environment.
“The staff are so keen to learn and it’s about building up their confidence so they can do it.
“We are also working with domiciliary care agencies, Marie Curie nurses, community nurses, GPs, plus medical and nursing students on placement with us here.
“Most of our work is not in this building but out in the community.
“The actual hospice is registered for only 12 beds – not that many people are admitted.”
Care home staff and support workers have been full of praise for the courses.
A support worker from Suffolk Family Carers said: “This course has taught me how to use my instincts, alongside understanding the processes, and given me courage.”
One participant from Age UK said: “It is useful to be reminded of the need to look at the person and not the condition.”
An employee of Clarke Care in Bury described the sessions as invaluable, while another from St Peter’s Nursing Home said: “I will now be more confident with filling out the advanced care plans and talking to families about it.”
The hospice services are for all those with a life-limiting illness, not just cancer but also conditions like motor neurone disease and heart failure.
Advances in treatment mean many patients live longer now and the hospice is adapting to keep up with their needs.
Pippa has worked there since 1999, including time as matron and a clinical nurse specialist.
“I have been in palliative care a long time and survival rates have gone up so much,” she says.
“Learning how to live with that illness is what those people need.
“We see them from the point of diagnosis. A lot of our work is helping them keep their independence and cope with their condition.
“We run positive living groups, and teach them and their families to manage symptoms so they know what to do rather than dialling 999 or going to A&E, and who to call if there is a problem.
“We have a 24-hour telephone helpline as well, which anyone can ring.”
The hospice was set up – with just one nurse giving homecare – in 1984, after Canon Richard Norburn who is now its president realised how much the service was needed.
Over the next decade it grew, supported by fund-raising appeals totalling more than £3 million, until the current building opened on the West Suffolk Hospital site in Bury St Edmunds in 1993.
St Nicholas serves a 260,000 population in an area covering Sudbury, Bury St Edmunds, Haverhll, Diss, Newmarket and Thetford.
The Burton Centre in Haverhill is another important way of extending its service.
“Here in Bury we are 20 miles from Haverhill,” says Pippa. “Some people who were coming to use our day services found the benefits were outweighed by the exhaustion of the journey.”
The centre, which opened last year, houses groups, clinics, café, and a drop-in centre where advice and information is available.
Other organisations like the Guides, Suffolk Family Carers and Headway also meet there.
“We want to be part of the community,” Pippa says.
Inviting people to ‘give a hand for hospice care’ by adding their palm-print to a giant mural is one of the ways St Nicholas supporters will celebrate Hospice Care Week.
The mural will be at the Burton Centre, Camps Road, Haverhill, on Monday October 5 at 2pm; at Thetford Market Place, from 9am on Tuesday, and at The arc shopping centre, Bury, from 9am on Wednesday.
Get Crafty, a weekly craft class for anyone with a long-term or life-threatening condition, their family and carers or anyone coping with bereavement is launched at the Burton Centre on Wednesday from 9.45 to 11.15am. Book on 01440 848260.
A new film that documents the vulnerable, tender and funny moments of everyday life in a hospice will have two screenings.
Seven Songs for a Long Life can be seen at the Burton Centre, Haverhill, at 2pm on Thursday, and at St Nicholas Hospice Care, Hardwick Lane, Bury, on Friday at 11am. Admission is free but donations will be welcome.
n Booking is essential: email “mailto:firstname.lastname@example.org”, email@example.com or pick up a ticket from the Burton Centre or Hospice reception.