An innovative project on Tyneside is helping terminally ill social housing tenants to have a 'good' death
Lynda Rand in her home in Jarrow. Home Group has provided equipment for her to stay as long as possible. Photograph: Chris Owens
From her eighth-floor corner-flat above Jarrow town centre, Lynda Rand has a stunning river vista from North Shields to Byker. Fireworks night is always spectacular, says Rand, who has also enjoyed a ringside view of the construction of the second Tyne Tunnel, which opened at the end of last year. "You'll never see the like of that happen again," she says.
The 54-year-old, who has the incurable lung disease bronchiectasis, is keen to remain in her rented one-bedroom home within this 11-storey block for as long as possible. To that end, she will soon take delivery of a new bed and receive help finishing off the redecoration of her bathroom. But she has also been promised a Dictaphone, to record some final messages for her daughter, and even tickets to see one of her favourite bands, Boyz II Men, next month in Gateshead.
The help and treats are all part of a pilot scheme run by Home Group, the north‑east-based social housing and care group founded three-quarters of a century ago in response to the 1936 "Jarrow Crusade" against unemployment and extreme poverty. The aim of the scheme, called A Good Death, is to support clients who are coming to the end of their lives, or who have been diagnosed with a terminal illness, to make practical arrangements and choices to enable them to remain in their own homes for as long as possible.
National survey
Better end-of-life provision is an increasingly prioritised agenda item within the NHS. There is growing recognition that, where possible, the dying should spend their final days or hours at home. Some of the impetus may come from budget cuts. Spending by health trusts on end‑of‑life care can be as much as £6,000 per patient. But last summer's palliative care funding review revealed that 65% of adults would prefer to die at home. At present, fewer than 20% do so, with more than half of all deaths happening in hospital and the rest in hospices or care homes. Only half of health trusts offer on-call nursing care at night to patients at home.
Tom Hughes-Hallett, chief executive of Marie Curie Cancer Care, who led the review, said too many patients were "simply yo-yoing in and out of hospital at the end of their lives" and recommended that hospitals and trusts be paid according to a reformed set of tariffs which encourage the establishment of community-based services, including 24-hour nursing, to enable people to die at home.
In Darlington, St Teresa's Hospice and Marie Curie Cancer Care have already developed a community "rapid response team" to offer such nursing care for patients, to help support families and prevent unnecessary hospital admissions as part of end-of-life care. And NHS North East conducted the UK's first regional public consultation on death and dying in 2009, followed by a "good death charter" a year later.
But the Home Group's nine-month scheme is an experiment in whether social landlords have a role to play in offering vulnerable tenants end-of-life care. The organisation manages 51,000 homes and provides care and support services, through its Stonham subsidiary, to more than 20,000 people around the country. Executive director for care and support, Rachael Byrne, says the good-death scheme is an example of how Home Group tries to mesh its core activities.
"We're not just about the bricks and mortar, but about improving outcomes for individuals," she says. "Fundamentally this pilot is about the importance of your home and how being there makes you feel at the end of your life. I know I'd want to die at home if at all possible, but if your home isn't sound or you don't have the right support there, that could make it difficult. Offering this kind of end-of-life care and support just makes sense to us, and so far the clients in our homes seem very positive."
The pilot, which began last September, is funded to the tune of £84,000 – £35,000 from the North East Health Innovation Cluster, which brings together NHS agencies, higher education and industry, and £49,000 from the Newcastle University-based Science City, which is evaluating the project. So far a dozen social housing clients have joined the pilot, each with a different terminal diagnosis, of differing ages and from a variety of family and support circumstances. It is currently administered by a single support worker, Jeannie Penman, but the aim is to extend it to 40 clients by the end of the nine-month trial.
At the outset, Byrne says the focus was on offering home aids and adaptations, but the scope has become broader as clients are given the opportunity to explain what would really help them. For example, one client with stage four breast cancer needs to sterilise equipment 15 times a day, but didn't have a dishwasher, so Home Group has helped her source one.
For others, the offer of laptops or training with social media such as Facebook and Skype means the chance to communicate with friends and relatives they can no longer visit. Some have requested practical help with gardening and cleaning, sorting out their paperwork, applying for benefits or planning their funerals. Another client has asked simply for someone to walk his dog from time to time.
Marie Curie, which has long campaigned for people to be looked after in the place of their choice, is contributing to the pilot by training volunteers to help with household chores and shopping, or to simply stop by for a chat.
"We don't profess to be experts in medical care, so we are working in more of a co‑ordination role with a range of partners," says Byrne. "However we are applying the skills we already have within Stonham to find out how we can really personalise this service. Our staff know how to work with individuals and are open to anything, if it delivers the right outcome." Some of the developing GP commissioning groups have already expressed an interest in how they might contribute to such end-of-life care, she adds.
In control
Back in Jarrow, Rand says the scheme is making "a big difference" to her. "It doesn't belong to me, but my flat is my home. And it's just nice to know someone cares and that people are interested in making your life more comfortable nearer the end. When I was first told that there was nothing more the doctors could do, I was devastated. But being focused on making plans, such as arranging my own funeral, has stopped me from becoming maudlin. It means I'm still in control."
She is far from maudlin, having expressed a wish to be cremated in a vodka-bottle shaped coffin before having her ashes scattered on the island of Lindisfarne, off the north-east coast. "Some community matrons do a lot of this kind of work, but they have enough to do meeting your palliative needs," Rand says. "More people should know about this kind of service."
Stuart Gray, a 74-year-old who has inoperable prostrate cancer, is looking forward to receiving a tablet device that he can use when resting in bed. But Gray, who lives in one of Home Group's supported flats in Sandyford, Newcastle, says the real value of the service lies in having someone to talk to. "Jeannie [Penman] has been here to see me four times. She found me a cancer support group at the hospital and has helped me apply for an allowance to pay for taxis home should I need one.
"But I see Jeannie now as a friend, so if she asked me pertinent questions like, 'have you made a will?' or 'do you understand about power of attorney?' I wouldn't get upset, because there's a friendship there. And I know that if I really had a bad day, I'm sure I could contact Jeannie and she'd come here, to help lift me out of that mood. It's not just about the money. It's as much about the relationship."
The 54-year-old, who has the incurable lung disease bronchiectasis, is keen to remain in her rented one-bedroom home within this 11-storey block for as long as possible. To that end, she will soon take delivery of a new bed and receive help finishing off the redecoration of her bathroom. But she has also been promised a Dictaphone, to record some final messages for her daughter, and even tickets to see one of her favourite bands, Boyz II Men, next month in Gateshead.
The help and treats are all part of a pilot scheme run by Home Group, the north‑east-based social housing and care group founded three-quarters of a century ago in response to the 1936 "Jarrow Crusade" against unemployment and extreme poverty. The aim of the scheme, called A Good Death, is to support clients who are coming to the end of their lives, or who have been diagnosed with a terminal illness, to make practical arrangements and choices to enable them to remain in their own homes for as long as possible.
National survey
Better end-of-life provision is an increasingly prioritised agenda item within the NHS. There is growing recognition that, where possible, the dying should spend their final days or hours at home. Some of the impetus may come from budget cuts. Spending by health trusts on end‑of‑life care can be as much as £6,000 per patient. But last summer's palliative care funding review revealed that 65% of adults would prefer to die at home. At present, fewer than 20% do so, with more than half of all deaths happening in hospital and the rest in hospices or care homes. Only half of health trusts offer on-call nursing care at night to patients at home.
Tom Hughes-Hallett, chief executive of Marie Curie Cancer Care, who led the review, said too many patients were "simply yo-yoing in and out of hospital at the end of their lives" and recommended that hospitals and trusts be paid according to a reformed set of tariffs which encourage the establishment of community-based services, including 24-hour nursing, to enable people to die at home.
In Darlington, St Teresa's Hospice and Marie Curie Cancer Care have already developed a community "rapid response team" to offer such nursing care for patients, to help support families and prevent unnecessary hospital admissions as part of end-of-life care. And NHS North East conducted the UK's first regional public consultation on death and dying in 2009, followed by a "good death charter" a year later.
But the Home Group's nine-month scheme is an experiment in whether social landlords have a role to play in offering vulnerable tenants end-of-life care. The organisation manages 51,000 homes and provides care and support services, through its Stonham subsidiary, to more than 20,000 people around the country. Executive director for care and support, Rachael Byrne, says the good-death scheme is an example of how Home Group tries to mesh its core activities.
"We're not just about the bricks and mortar, but about improving outcomes for individuals," she says. "Fundamentally this pilot is about the importance of your home and how being there makes you feel at the end of your life. I know I'd want to die at home if at all possible, but if your home isn't sound or you don't have the right support there, that could make it difficult. Offering this kind of end-of-life care and support just makes sense to us, and so far the clients in our homes seem very positive."
The pilot, which began last September, is funded to the tune of £84,000 – £35,000 from the North East Health Innovation Cluster, which brings together NHS agencies, higher education and industry, and £49,000 from the Newcastle University-based Science City, which is evaluating the project. So far a dozen social housing clients have joined the pilot, each with a different terminal diagnosis, of differing ages and from a variety of family and support circumstances. It is currently administered by a single support worker, Jeannie Penman, but the aim is to extend it to 40 clients by the end of the nine-month trial.
At the outset, Byrne says the focus was on offering home aids and adaptations, but the scope has become broader as clients are given the opportunity to explain what would really help them. For example, one client with stage four breast cancer needs to sterilise equipment 15 times a day, but didn't have a dishwasher, so Home Group has helped her source one.
For others, the offer of laptops or training with social media such as Facebook and Skype means the chance to communicate with friends and relatives they can no longer visit. Some have requested practical help with gardening and cleaning, sorting out their paperwork, applying for benefits or planning their funerals. Another client has asked simply for someone to walk his dog from time to time.
Marie Curie, which has long campaigned for people to be looked after in the place of their choice, is contributing to the pilot by training volunteers to help with household chores and shopping, or to simply stop by for a chat.
"We don't profess to be experts in medical care, so we are working in more of a co‑ordination role with a range of partners," says Byrne. "However we are applying the skills we already have within Stonham to find out how we can really personalise this service. Our staff know how to work with individuals and are open to anything, if it delivers the right outcome." Some of the developing GP commissioning groups have already expressed an interest in how they might contribute to such end-of-life care, she adds.
In control
Back in Jarrow, Rand says the scheme is making "a big difference" to her. "It doesn't belong to me, but my flat is my home. And it's just nice to know someone cares and that people are interested in making your life more comfortable nearer the end. When I was first told that there was nothing more the doctors could do, I was devastated. But being focused on making plans, such as arranging my own funeral, has stopped me from becoming maudlin. It means I'm still in control."
She is far from maudlin, having expressed a wish to be cremated in a vodka-bottle shaped coffin before having her ashes scattered on the island of Lindisfarne, off the north-east coast. "Some community matrons do a lot of this kind of work, but they have enough to do meeting your palliative needs," Rand says. "More people should know about this kind of service."
Stuart Gray, a 74-year-old who has inoperable prostrate cancer, is looking forward to receiving a tablet device that he can use when resting in bed. But Gray, who lives in one of Home Group's supported flats in Sandyford, Newcastle, says the real value of the service lies in having someone to talk to. "Jeannie [Penman] has been here to see me four times. She found me a cancer support group at the hospital and has helped me apply for an allowance to pay for taxis home should I need one.
"But I see Jeannie now as a friend, so if she asked me pertinent questions like, 'have you made a will?' or 'do you understand about power of attorney?' I wouldn't get upset, because there's a friendship there. And I know that if I really had a bad day, I'm sure I could contact Jeannie and she'd come here, to help lift me out of that mood. It's not just about the money. It's as much about the relationship."
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