The new model of care: struggling supported living dementia scheme £800k in debt

The Gnangara development opened in December 2010 /

By Niall McCracken

A MULTI-MILLION pound purpose-built supported living scheme for people with dementia is still struggling to fill places over two-and-a-half years after opening.

Eighty percent of Gnangara’s supported living units just outside Enniskillen remain vacant, with the latest figures showing the development is currently running a deficit of £800k.

The Detail can also reveal that between April 2012 and August 2013 Gnangara received no self-referrals from potential tenants and only five referrals were received through the Western trust.

Management has confirmed to The Detail that, in a bid to save the scheme, it has been forced to re-think the original criteria for the project and has started offering the accommodation to people without dementia.

Fold Housing Association won the contract to manage the Gnangara development after a tendering process was opened by the Western Trust.

Fold admits it has been left “disappointed” by the lack of uptake in the bungalows.

However, its Director of Care Services, Fiona McAnespie says the organisation was assured by the trust that there was “a need for this type of accommodation in the area”.

In a statement to The Detail the trust said it was “working with Fold to improve the occupancy of the facility”.

As part of our investigation we have obtained exclusive access to the supported living facilities. We have spoken to one elderly couple who have been living in one of the bungalows for the past eight months – despite neither of them having dementia.

We also look at similar schemes in Belfast that are currently running at full capacity.

“DISAPPOINTED”

Fold says Gnangara is a “cutting-edge facility” for people in the locality with dementia. The main goal of the supported living scheme is to help people with the illness maintain their independence through “low-level support in their own purpose-built accommodation”.

Residents can come and go as they please with the assurance of knowing that there is built-in technology allowing access to help and assistance 24 hours a day.

Only three of the 15 supported housing bungalows at Gnangara are currently occupied.

Fold’s Director of Care Service, Fiona McAnespie admits that despite promotion of the bungalows, uptake remains disappointingly low.

She said: “We have been disappointed with the uptake; this really is a state-of-the art building and beautifully designed. Anybody in the local area will see we still have the billboard outside and we continuously promote it. We’ve recently started spreading the net wider than Enniskillen to try and promote the scheme."

Gnangara operates as a three way partnership between the Western Trust, Fold Housing and the Northern Ireland Housing Executive (NIHE), to try to identify potential tenants.

The Northern Ireland Housing Executive’s 2010 report on The Future of Housing and Supported Needs of Older People in Northern Ireland, shows that owner-occupation among pensioner households is well above average in Fermanagh and Omagh (69%).

While pensioner households in Housing Executive homes is lowest in Fermanagh and Omagh (17-18%).

Ms McAnespie believes the make-up of housing need in rural areas, as well as a lack of understanding about the benefits of this model of care could explain the low uptake.

She said: “We’re not really very sure why there’s been a problem here. I think part of it might be the rural area. Obviously in Fermanagh you have massive ties to land and property. Maybe people don’t understand how the funding structure works and that this type of accommodation is affordable.

“Also even now there is still a stigma that goes with dementia diagnosis and people cover it up, so you have families trying to cope with the care needs. However, we know from our own experience and countless research that the benefits of letting someone with dementia maintain their independence for as long as possible, are huge.”

Olive Johnston is the Dementia Support Manager for the Alzheimer Society in Fermanagh.

She said: “The Alzheimer’s Society welcomes the fact there are a variety of options available to people with dementia and their families from supportive living properties to full nursing care. These are essential to many people as they progress through the illness.

“However for a variety of reasons, including cost, some people may prefer to maintain their independence by staying at home for as long as possible supported by domiciliary carers. This can often be a good solution for people living with dementia as they can stay in familiar surroundings and still feel part of their local community”.

CHANGING STRATEGY

Fold has made the accommodation available to people without dementia /

Fold has confirmed to The Detail that in recent months it has opened up the bungalow accommodation at Gnangara to people without dementia.

Husband and wife, Peter and Susan Eggleton, have been in one of the bungalows for eight months. Neither of them has dementia, but Susan has mental health problems and suffers from recurring stress-related seizures.

Susan believes the supported living accommodation at Gnangara has enabled her to keep her independence.

She said: “Because of the seizures there are times that I do get confused and I can’t walk without support. The bungalow we had before was too big for me to manage.

“Here we have the security of knowing that there is assistance close by if we need it. So it meets my health needs as well as allowing for independence.”

Despite the new strategy, currently only three of the bungalows remain occupied.

In contrast, two similar schemes In East Belfast are currently running at full capacity.

Sydenham Court and its sister service Mullan Mews are both run by the Belfast Trust. They provide tenancies to 55 people living with dementia.

Mullan Mews provides accommodations for people with dementia in the form of a small group living model, with up to six tenants in each of five terraced houses that are physically interlinked. While Sydenham Court offers individual self-contained apartments within a scheme.

The Belfast Trust confirmed that, based on the effectiveness of Mullan Mews and Sydenham Court, a third supported housing scheme has recently opened in north Belfast and that a business case has been approved for a fourth scheme for people with dementia in west Belfast.

The Housing Executive’s 2010 study on housing need for the elderly shows Belfast had the lowest owner-occupation among pensioners (55%), while there was a relatively high proportion of pensioner households in Housing Executive homes (30%).

In a statement to The Detail the trust said: “The concept of supported housing for people with dementia challenges the dominant belief that residential and/or nursing homes are the only viable options for long term care.”

TRANSFORMING YOUR CARE

As well as the supported living facilities at Gnangara, there is also a contract in place between the Western Trust and Fold Housing to provide a 15-bed residential care service on the grounds for people with dementia. This service is currently at full capacity.

The key goal under the Department of Health’s Transforming Your Care (TYC) Policy is for elderly people to live as independently as possible.

There are plans for 50% of statutory (trust-run) residential care homes to close here over the next 3-5 years.

Making “home the hub” and other alternatives to nursing and residential care, like Gnangara’s supported Living Scheme, are the preferred model of choice under the TYC policy.

The decision of some health trusts to close their residential care settings earlier this year, forced the Health Minister, Edwin Poots, to intervene and withdraw the trust’s power to make these decisions.

Late last month it was announced that a fresh consultation would take place on the proposed closure of NHS residential care homes in Northern Ireland.

Fold’s Fiona McAnespie acknowledges that the success of Gnangara’s residential unit means problems with the supported living bungalows can’t simply be explained by the rural location.

She said: “The residential unit has been so successful and we would have a waiting list, so obviously people are keeping their loved ones at home until the point when they do go to their GP or social services they need 24-hour secure or nursing care.

“For our supported living accommodation we really need to be getting people before that."

However, Ms McAnespie maintains that Fold took on the project in good faith and in line with the Department’s policy.

She said: This was a commissioned building for us; we didn’t build at risk here. We entered a competition with the Western Trust and we were told there would be need for this type of accommodation.

“So I think if there’s learning form this particular scheme, it’s if you’re going to build, you really need to do a needs analysis and this needs to be done in great detail. I know that’s something the Health and Social Care Board is looking at so they are learning from the experience here at Gnangara.”

In a statement to The Detail the Western Trust said: “The Trust is working with our partnership agency Fold Housing who run the facility to improve the occupancy of the facility, however clients have the option to choose their preference of accommodation.”

Earlier this year The Detail sent a Freedom of Information request to each of the five health trusts here asking for a breakdown of their dementia spend over the past four years.

The figures only provide a

The figures only provide a

The figures show that dementia specific services accounted for almost £380m of trust spend since 2009.

Each trust stressed that the figures only provided a “minimum expenditure” for dementia spend as other services for people with dementia may be provided within other “core community and primary care services”.

The Department of Health say that since 2008 the amount of domiciliary care provided has increased by more than 12% in Northern Ireland. The figures provided to The Detail under FoI show huge cuts on residential dementia care since 2009 with resources being directed towards dementia community care.

A further breakdown of the dementia expenditure in the Western Trust alone shows that “Independent home expenditure” went from just £658,051 in 2009/10 to £6,207,798 in 2012/13.

In a statement to The Detail, the Western trust said the difference in expenditure is due to a change in the “financial reporting practices after the former legacy trusts joined to form the Western Trust.”

Maria McManus is an Independent Dementia Care Consultant and former Director of Northern Ireland’s Dementia Development Centre.

She believes Gnangara raises important questions about where the supported living model of care should be used in the future.

She said: “Often when you’re trying to implement policy, practice itself brings up unexpected obstacles. In Gnangara’s case, maybe dynamics are different in urban areas, where you have a higher density population, perhaps more people living on their own.

“The current economic situation could be one of the big factors that is deterring people. If people’s properties aren’t worth what they were, this could lead to people staying at home longer and trying to cope.

“But I’m heartened that places like Fold are still trying to create alternatives so that older people with these type of conditions have a chance at a better quality of life.”

The Department’s TYC policy states that when it is not possible for people to be supported to live in their own home, supported living facilities have “an important role to play in the continuing of support services which should be available”.

In a statement to The Detail a DHSSPS spokesperson said: “Once an individual’s assessed needs have been identified and a decision is made about which environment is best for meeting those needs, each individual should be able to exercise personal choice when identifying the residence that is right for them.”

Fold’s Fiona McAnespie says despite the difficulties, the organisation would continue to promote the service.

She said: “At the moment we’re looking at £800k of deficit and that is totally carried by Fold. It was a commissioned build, but we totally foot that bill. Perhaps, maybe we were a little bit ahead of the time, but we were told that there was a need in the area and it is a great disappointment to everybody involved that the need doesn’t seem to be here.

“However, Fold would still feel that supporting people with dementia in this type of care model is the way forward.”

© The Detail 2013

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