Helping terminally ill patients live comfortably in their own homes can save money and, as Lydia Stockdale finds out, greatly improve people’s quality of life. Illustration by Georgina Hounsome
Last October Lynda Timberlake’s doctors sent her home after telling her ‘there was nothing more they could do’. Since then, the 55-year-old has been planning for her own death.
Speaking from her private rented one-bedroom flat in Tyne-and-Wear, Ms Timberlake, who has lung disease, explains how she’s chosen the crematorium in which she wants to be cremated, and she’s ordered her coffin.
‘It’s an eco-friendly recycled cardboard coffin which cost £120. And I’m having it printed with three sides of a Smirnoff vodka bottle,’ she says with a smile in her voice.
There’s no tip-toeing around the normally taboo subject of death with Ms Timberlake – she’s taking matters into her own hands. And despite being a private tenant, she’s being supported in doing so by Newcastle-based landlord Home Group through its ‘A good death’ pilot project.
Through the project, the 55,000-home social landlord has given her the equipment and support she needs to stay in her own environment.
The independent Palliative Care Funding Review, published last July, found that 65 per cent of adults would prefer to die at home – but only 20 per cent actually do. Ms Timberlake is sure that without Home Group’s help, she would have had to spend more time in hospital.
The mother of two grown-up children is surprised that a housing association that is not her landlord would enable her to live the kind of life she wants while she can.
Ms Timberlake recalls how she was ‘amazed’ when she was referred to Home Group by her NHS community matron and found out what it was offering to her and other terminally-ill people.
The nine-month pilot, which began last September and ended in June, is the UK’s first social care pilot scheme supporting terminally-ill patients with a range of services delivered in their own homes.
Funding for the £84,000 project came from the North East Health Innovation Cluster, part of Public Health North East, which contributed £35,000, and the Newcastle Science City initiative, which put in £49,000.
Its aim was to demonstrate that ‘everybody, including housing organisations, has a part to play within the community in ensuring we are compassionate towards people who are dying’, explains Edwin Pugh, consultant in palliative medicine at University Hospital of North Tees in Stockton-on-Tees, and chair of the north east regional advisory group for A good death, which commissioned Home Group to conduct the A good death pilot.
The evidence shows that, by working together with health professionals and palliative care experts from organisations, such as Marie Curie Cancer Care, Home Group was not only able to provide practical support to 47 people who qualified for the project because they have life-limiting conditions – it also saved the NHS money by enabling individuals to stay in their own home for as long as possible (see box, overleaf: A good death: the outcomes).
This is useful knowledge for housing providers looking to build relationships with health bosses, given that the latter have been tasked with finding £20 billion worth of savings by 2015 (Inside Housing, 15 June 2012).
‘Our mission values are all about delivering the best outcomes for customers,’ says Rachael Byrne, executive director for care and support for Home Group. ‘If there is a way we can enable them to remain in their homes in the last stages of their life – if that’s their wish – then that meets our
First, there is the help service users get from Jeannie Penman, Home Group project worker for the pilot. ‘Jeannie takes away the pressures from them. She’s someone they can phone,’ explainsMs Byrne. ‘It’s not traditional care and support, they are not allocated a certain number of hours of Jeannie’s time, it’s more flexible than that.’
Then there’s the individual budget of up to £1,000 which each person gets to spend on whatever they need to help them stay at home. ‘For example, [the money] might provide someone with a laptop so they can communicate with friends and family,’ explains Ms Byrne. Often it’s the practical help arranging the purchase of these things that people who are very ill appreciate most, she adds.
One lady, who has cancer and whose body can no longer fight infections, wanted a dishwasher which could sterilise household items, so Home Group bought her one. This reduced the number of visits she made to the doctor, each of which would have cost the NHS approximately £36 – rising to £120 for a home appointment.
The pilot also allowed Home Group to source additional funding for those in need. One owner-occupier who had bone cancer was stuck in hospital because doctors wouldn’t allow him to go home as there was a leak in his roof which he could not afford to mend. The housing association applied for £3,500 of funding from the cancer charity Macmillan and the A good death fund to replace the roof.
‘Home Group organising for this work to be done means he is able to spend his dying days with his child,’ says Ms Byrne. ‘He also says that his pain relief has reduced by 10 per cent by being at home.’
On top of this, the new roof saved the NHS money – £2,334 is the typical cost of being admitted to hospital for three or four days.
Ms Timberlake’s biggest expenditure was on a new bed. ‘The bed I had originally was five inches off the floor and I was struggling to get up off it,’ she says. ‘Jeannie told me, “Go and find yourself the bed you like at the height that is suitable for you, tell me where it is and we’ll sort that out for you” – so I did.’
Because getting up out of the old futon put pressure on her lungs, it took Ms Timberlake a long time every morning just to stand up, but she couldn’t afford to buy a new bed herself.
Ms Timberlake has lived with a lung disease called bronchiectasis – the irreversible dilation of part of the lung caused by destruction of muscle tissue – since the age of two, when she had tuberculosis. She worked in call centres for BT and then Churchill insurance until 13 years ago. ‘I absolutely loved it, but I just couldn’t manage it anymore,’ she says.
She now also has ‘a lethal bug called pseudomonas, which has colonised’, she explains. Pseudomonas bacterium, which is commonly found in soil and water, often affects people who are already ill as it exploits breaks in the human body’s defences to initiate an infection.
‘Once you’ve got it you can never get rid of it – all they can do is treat it and dampen it down all of the time,’ says Ms Timberlake. However, in her case this is proving impossible as she has severe allergic reactions to the antibiotics normally used to control pseudomonas.
‘I’ve had the drugs so many times, my body doesn’t like them. They’re struggling to find an antibiotic to give to me,’ she says.
Living at home
Ms Timberlake is now dealing with the fact that her lung disease has reached an ‘advanced’ stage. Although she’s got to know the staff on ward 10 at South Tyneside District Hospital well, she’s happy that Home Group has been able to provide her with the things she needs to be comfortable in her flat, which overlooks the River Tyne. ‘It’s much better at home,’ she says.
Through A good death, Home Group also bought Ms Timberlake a cooker, ‘the one my landlord had put in was leaking water,’ she says. ‘My washing machine blew up just after Christmas, so they got me a new one. They got me a new hoover because my other one dropped to bits. They also finished the decorating in the bathroom for me because I couldn’t do it,’ she says.
On top of that, the housing association arranged for her stay in a cottage on the Isle of Skye for a week, and to meet boy band Boyz II Men backstage before they performed at The Sage in Gateshead – Home Group’s marketing team contacted Boyz II Men’s management and told them Lynda’s story. ‘It was fabulous, absolutely brilliant,’ she says of the experience.
Finally, the pilot money paid for a dictaphone, ‘so that when I’m gone I can leave messages for my daughter’. ‘When someone dies, you forget what they sound like, so I thought I’d leave messages for my daughter for her to listen to if she wants to.’
The housing association offered to help Ms Timberlake claim benefits and to arrange her funeral, but she had already done those things herself.
Ms Byrne says Home Group has been surprised by the number of middle-aged people, like Ms Timberlake, it has helped through the pilot – they had expected most of the service users to be older. At first, a lot of the organisation’s discussions with Public Health North East were around funding adaptations to people’s homes, because it had an older demographic in mind, but that didn’t turn out to be where the money was needed. ‘The well-being aspect has been important,’ she explains.
Now Home Group is negotiating an extension of the pilot, and its plan is try to roll out A good death nationally, and it is already in discussions with six NHS Primary Care Trusts across England. ‘We would try to allow access to everybody in the community, but we would concentrate on areas where we have stock,’ says Ms Byrne. In future, the service can be delivered through grant funding from PCTs or commissioning groups – it can also be self-funded by individual service users.
The pilot ran with the equivalent of two full-time members of staff, Ms Penman and input from a service manager, service co-ordinator and area business manager. Three volunteers also gave their time to help do things such as walking people’s dogs if they were too ill to leave the house.
If A good death is rolled out, more of Home Group’s staff will be involved. Ms Byrne says that from an organisational point-of-view, the scheme allows the two sides of the social landlord’s business – housing and care and support to work together. The housing association’s care and support services are delivered through Stonham and make up more than a third of the organisation’s turnover. ‘It effectively allows us to use the skills of our care and support staff across in our main housing base,’ she explains.
As a result of being approached by Public Health North East to run A good death, Home Group has been able to expand its services into the previously uncharted territory of palliative care.
All parties have now seen the benefit of health and housing working together, and this is something that other social landlords can draw upon. For example, when landlords make their case for being represented on the health and well-being boards which are being established across England in order for social care representatives, local authority staff and health providers to set the direction of commissioning services.
As for Ms Timberlake, the help she’s received through A good death means she’s been able to get on and live her life. ‘I’ve got too much to do to go anywhere yet,’ she says.