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How we empowered care homes to meet patients’ wishes

Dr David Rooke and Jayne Nicholas explain how WyvernHealth.Com, their PBC group, has invested in training that enables care home staff to look after patients in their final days

About one in five people in the UK dies in a nursing or residential care home. In Somerset two years ago, the figure was some 22%.

Although 82% of people in Somerset said they would choose to die at home, 43% of deaths were in an acute hospital. Talking to our secondary care colleagues highlighted their awareness that a significant number of terminally ill patients were admitted as emergencies and died in hospital.

Local GPs also expressed concern that once taken to hospital these patients would go onto the medical assessment units (MAUs) where families and patients reported feeling they were ‘in the way'. They would sometimes wait up to six hours to be seen by a junior doctor with limited palliative care experience before the struggle began to find them a bed.

Of course none of this was intentional – hospital MAUs simply weren't the right place for those patients to be.

We also had some figures from the South West ambulance service showing up to a five-fold difference between care homes in the number of out-of-hours calls they made. Tongue-in-cheek talk was heard about removing the number ‘9' from some care homes' phones.

To be fair, we now know that some care homes' calls to out-of-hours were automatically upgraded to ambulance requests even if this was not the caller's intention.

In the last year we have managed to commission end-of-life training for 33 care homes, 27 nursing homes, six residential homes and are very encouraged by the initial positive results for patients from a relatively modest investment.

First steps

We were fortunate to have Dr Chris Absolon, a local GP and clinical champion who was enthused by the national Gold Standards Framework for general practice and gave a presentation to the board about the Gold Standards Framework for Care Homes programme (GSFCH) www.goldstandardsframework.nhs.uk

It is a one-year structured training programme provided by the central Gold Standards Framework team leading to a formalised accreditation as a GSFCH on a national database and an award ceremony. Each home has to appoint a co-ordinator and send two delegates to each workshop.

There are three stages to the framework.

• Stage 1 For three to six months, homes are provided with DVDs, brochures and introduction letters to enable them to prepare for the training, and identify who will be their coordinator.

• Stage 2 Participants attend four workshops over a nine-month period with homework in between, regular meetings within the home with support from the PCT's palliative care lead nurse and GP and local hospices. These facilitators work with geographical groups of homes.

• Stage 3 This is the accreditation stage and takes nine to 12 months. It includes self assessment against 20 standards of the accreditation checklist, a portfolio of evidence and a GSFCH assessor visit.

The training means each resident in the participating care homes is offered an advanced care plan (see box right). If the person chooses not to have one, their wishes are respected.

Business case

It was easy to put the business case together as the training cost was a relatively modest £1,600 per care home. Also the GSFCH standard has been proven to cut hospital admissions and hospital deaths by half (see evidence paper on GSF website).

Providing training for all 66 care homes in the area came to £105,600 and the training also required us to pay for conference venues for 100 delegates for eight training days, which came to £20,000. Care homes were asked to contribute £250 each, which came to £16,500, so the amount needed was £109,100 which would be spread over four years.

Records showed 330 admissions for 32 of the nursing homes in 2006/7 cost a total of £594,000. Reducing admissions by, say, 12% would save £71,280 in year one.

More and more commissioning is being done in our area by our PBC group, WyvernHealth.Com. It covers all 76 Somerset practices and our focus has always been on commissioning. Once we have agreed a business plan it goes to the PEC board and then goes to the PBC approval committee.

The PCT supported the proposal by providing a 0.6 whole-time-equivalent GSFCH co-ordinator to work on the project.

Care homes on board

Some homes had already heard about the GSF via the Commissioning for Social Care Inspectorate visits and we used their register to make initial contact with the homes by letter.

Some care homes were more enthusiastic than others to begin with and so the first tranche of training was for 33 homes in 2008. As these underwent their training, however, news spread quickly about the GSFCH – and we hope to have a further 33 homes recruited for the next training programme.

Factors that have stopped care homes being involved with the training included:

• high staff turnover

• high sickness levels

• insufficient resources

• inability of local co-ordinators to attend workshops and coordinator meetings.

A new development is a buddying system between nursing homes so that nurses faced with a clinical decision working in isolation out of hours can phone one of their peers to discuss, get reassurance and support for their actions.

Outcomes

Care home staff are now able to make informed decisions and support the wishes of patients and relatives. That has been much more powerful than we envisaged – staff are saying ‘where's the care plan' and using it to speak to the GP. And when events happen out of hours they know where the care plan is and can make paramedics or the duty GP aware of it. In some cases the care homes are confident, having recently liaised with the patient's GP, what the patient's needs are and can avoid phoning out-of-hours services altogether.

Although figures on reducing admissions are not ready we are confident the training has reduced the number of hospital admissions and deaths. To other commissioners thinking of doing the same our advice would be get on with it quickly – it's cost-effective and great for patients.

Dr David Rooke is a GP in Bridgwater, Somerset, and chair of WyvernHealth.Com; Jayne Nicholas is implementation manager for WyvernHealth.Com

Training into practice

Dr Chris Absolon, palliative care lead for Somerset, explains how the training enhances patient care


Once a resident is settled in the home a nurse will meet them and usually their family to discuss advance care plans. It's important that this happens early on before the patient becomes less well.

Before the training, some nurses had said they didn't think residents would want to talk about this, but they have found the opposite.

Relatives too have said they were dreading having ‘that conversation' but said they were pleased it had taken place.

The advance care plan can explore what patients do and don't want, such as resuscitation wishes, the place of care, any special things they would like or not like and who they would like with them. It can also uncover potential legal issues such as advance decisions to refuse treatment.

A copy of the plan is sent to the patient's GP and a summary is sent to the out-of-hours service and the ambulance trust.

The homes then categorise roughly how long that patient might be expected to live, because what is done for someone expected to die this week is different from what is done for someone expected to survive for a couple of years. Patients can be moved from one category to another – the point is to prompt the home to think about what it might offer that patient.


Category A
A year or more to live – the home would try to ensure it has an advance care plan discussion.


Category B
Some months to live – an advance care plan will be made and decisions will start to be made about final arrangements.


Category C
Weeks to live – the patient's GP is fully involved and made aware that the person is deteriorating so medical needs can be assessed, anticipatory prescribing sorted so pain, shortness of breath, respiratory tract secretions, agitation, nausea and vomiting can be treated by staff rather than by calling the out-of-hours GP. A handover form is faxed to the out-of-hours service.


Category D
Days to live – Liverpool Care Pathways can be used. Prognosis can be discussed, there is close contact with the GP and family, symptoms are assessed and controlled, spiritual care is offered, pre-bereavement care is considered.

Dr David Rooke A Care home's perspective

Sarah Collard, manager at Mountbatten home in Taunton, Somerset, shares how the GSF training resulted in positive end-of-life care for one resident


With Mrs G, the GSF worked perfectly. We had moved onto a higher ‘yellow' coding about two weeks previously and had all the contingency medications and signed paperwork. The resident was in the end stages of dementia and became very agitated and distressed. It appeared she had cerebral agitation.

The family visited every day on a rota system and wrote in a book to each other about their mother's condition from day to day.

The daughter who was present when the agitation began didn't know what to do, but I was able to reassure her and give her mother appropriate medication to immediately ease the agitation. I had to
give two injections but within 20 minutes Mrs G was settled.

It was evident she was approaching the end of life, which the family and I had already talked about. I had given them leaflets so they had a good knowledge of what was happening.

The rest of the children were called and were all present. We discussed a syringe driver, which was agreed. The GP was informed and he visited later in the day.

Mrs G died at 02.30 the following morning with all the family around her, singing her favourite songs and reminiscing.

It was a peaceful, good death and everyone was able to relax and enjoy their last few hours with their mother.

The GSF has given us the clarity and
back-up to deliver the end-of-life care our residents want.

Business case for implementing GOLD standards GSF newsletter Interim report Place and cause of death presention