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Learning from experience in end-of-life care

Experience-led commissioning is a model built on four consecutive stages:

• needs assessment

• service design and specification

• contract negotiation

• monitoring and review.

It was piloted for end-of-life services in Healthworks clinical commissioning group  – which covers part of the NHS Sandwell and NHS Heart of Birmingham PCTs – in 2011. We ran six co-design events from May to November 2011, and six management meetings from March to November. The co-design events, aimed at GP commissioners, service providers, patients and carers, began by assessing the current experience and defining the ideal experience.

In the summer, a vision for end-of-life care was developed and in September commissioners invited the community to a ‘pledge and design' meeting to commit to the vision and problem-solve challenges in the strategy. The final meeting in November tackled both rewards for good performance and ways of measuring improvement.

During the same period, GP commissioners set up a task and finish group to manage development of the new strategy, which met four times. Clinical leaders met independently once for an implementation planning meeting in late August, and the strategy development culminated in a board presentation on 1 November 2011.

Here are the key learning points from our experience.

1 Understand your problem

It's important to target your commissioning effort. In our locality, 6.4 people die per 1,000 population every year. Some 70% of all deaths are in people over 65. Currently, 65% of these die in hospital, 10% in nursing homes and 21% at home or in residential care. These figures show us where we need to focus our effort.

We decided to focus on improving our population's end-of-life experience and keep patients at home where appropriate. We will do this by improving diagnosis of dying, helping people describe how they want their end of life to be so the system can respond, creating more capacity in primary care through redesign and investment in specialist GPs, and improving the system's response to acute symptoms – especially respiratory and cardiac crisis, and UTIs.

2 Join up commissioning decisions

As well as focusing on end-of-life care, our CCG wants to reduce hospital admissions. We quickly recognised that how we manage end-of-life care would be key to this. In their last two years of life, local people who die in hospital spend an average of 23 days there and in the last 12 months of life, people experience three admissions on average. We calculated that in a population of 150,000, preventing two of these admissions in those over 65 would realise over £1.4m in tariff savings per annum and free up, at a conservative estimate, 10,695 bed days – around 25 to 30 fully occupied beds. The more links we looked for between different strands of our commissioning work, the more efficient it became.

3 Bring QIPP and commissioning together

We have integrated our commissioning strategy to include QIPP work programmes around end of life, care homes and unplanned admissions. Improving end-of-life care is a more engaging agenda for GPs than simply saving money, and so that is how we are presenting QIPP now.

The challenge for clinical commissioners is that QIPP and commissioning have now all been decoupled into a host of different workstreams, happening in parallel across PCT clusters. The beauty of end-of-life care is that it provides a focus on a group of people who need special attention from commissioners and care providers.

We recognised, for example, that almost everyone in care homes should be on our palliative care register – and that if they are, it reassures care home staff so that they do not immediately call an ambulance when someone has acute-onset symptoms.

In Birmingham, a one-number access service for district nursing support has been opened to care homes as part of the existing QIPP programme, and we want to build on this to improve community-based responses to acute symptoms at the end of life.

4 Secure investment and support

Doing our work on end-of-life care cost £60,000, which was provided by the Department of Health. This included venue costs for six meetings, administrative support and the time of our external partners to run the events and write up the findings. However, this cost underestimates the investment made by the 100-plus participants who gave their time for free. We also got valuable pledges of support that have tangible value and will help us take our work forward in a cost-effective way – for instance, free laptops and free use of meeting venues.

5 Engage clinicians

Most frontline healthcare professionals think commissioning sounds boring and difficult. But GPs often report that our events do not feel like commissioning, and helped them to reflect on their clinical practice. A University of Westminster analysis reported that commissioners felt experience-led commissioning was less ‘tokenistic' than other models of patient engagement, and that stakeholder engagement was much higher than with other models. Positioned as a change management process, the model also generated better motivation among event attendees, and those with experience of working with the private sector said it had a lot in common with product or service development. (The analysis is available at:

6 Collect and combine both hard and soft data

‘Hard' data helps GP commissioners to navigate the system and prioritise commissioning focus, while ‘soft' qualitative data enriches understanding of the challenge faced and provides signposts to the solutions to those challenges.

We had used hard data on admissions to predict that end-of-life care could realise over £1.4m in savings a year. We also collected soft data from patients in the form of views that end-of-life care was too medicalised. Patients told us that they wanted less medical intervention and more holistic care, and so it became clear what direction end-of-life services should take.

7 Co-design with patients and the community

More than anything, people told us they wanted choice. They recognised they would need help to understand their options – though not necessarily from a clinician. People wanted the system to listen and respond in a co-ordinated way. The experience people wanted at the end of life was hallmarked by feelings of being at peace, and being supported and reassured by people who were efficient, cheerful, kind, honest and respectful.

Until now, the only conversation people had wanted to engage commissioners in was about building a hospice in Sandwell. Now they have bought into a shared vision of a virtual hospice and better end-of-life care in all settings. Shared vision attracts funding. When we bid for enablement monies, we backed our bid with a clear mandate and well-rehearsed proposals. We were awarded £50,000 from a non-recurring fund at the PCT cluster, and are talking to Macmillan Cancer Support about the strategy for hospices and the third sector, who will bring finance and resources.

8 Focus on two to three high-impact aims

The three key actions that stood out for us and are our short-term focus are:

• Improved primary care support and more systematic use of palliative care registers Based on our calculations, registers should capture at least 6.2 patient deaths per 1,000 population. Currently they capture only a fraction of this and tend to focus on people with cancer or other terminal diagnoses. We identified that GPs needed to develop their expertise in diagnosing dying – most especially in older people – and in sharing the news so that patients had a chance to think through how they wanted their end of life to be. This is going to create more work, so we are looking for sustainable redesigns for existing primary care services.

• Capturing and responding to patients' stories As well as improving diagnosis of dying, we need a systematic approach that enables people to express their choice and preferences about end-of-life care. We are looking to embed narrative-based assessment – a technique that supports people to explore with a trained ‘listener' what matters to them and express their preferences, which will then be translated into a management plan that the system responds to. This means investment in training and integration of a holistic approach with existing, more clinically led, pathways. We are building on the Gold Standard Framework and local supportive care pathways, and harnessing local expertise within the voluntary sector and hospices to deliver this locally.

• Improved ability to respond and manage acute symptoms in the community Frontline professionals told us that being able to manage symptoms and keep people peaceful during respiratory or cardiac crisis was key. For instance, UTIs were crises that far too often led to hospitalisation and death. We are looking at how to ensure teams can respond to acute symptoms and keep people at home.

Dr Niti Pall is a GP in Birmingham, chair of Healthworks CCG and a member of the NHS Alliance executive committee

Debra Sprague is an advanced nurse practitioner in Smethwick, Birmingham


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