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Turning the personal into the powerful

Dr Jagan John and Marisa Rose explain how patient stories were crucial to redesigning care for people with chronic and complex problems.

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‘I just keep the door open because I don't know who is coming next,' was how one elderly woman with diabetes explained her experience of dealing with multiple providers and carers.

In another case, a wife was thrust into the role of 24/7 carer when her diabetic husband went blind almost overnight. He had been discharged from hospital without co-ordinated care and his wife had to start looking after him with no training support. ‘If you put this out as a job advert, nobody would take that job,' she said.

These kinds of patients – let down by multiple providers offering a disjointed service – were the impetus for an overhaul of the care of patients with chronic health problems in Outer North East London PCT cluster (ONEL). We wouldn't accept what they were experiencing if it was happening to any of our own family or friends. It had to change.

A joint health and social care solution to meet the needs of and maximise quality of life for people with long-term conditions – ONEL Integrated Care  – was the response. It has been two years in the making, with assistance from the Department of Health's long-term conditions QIPP team. The project went live in Barking and Dagenham six months ago, while neighbouring boroughs Redbridge and Waltham Forest began rolling it out in December.

Population challenges

The CCGs of ONEL, covering around 1.2 million patients, face tough challenges. Barking and Dagenham, for instance, has higher than average rates of deprivation, child poverty, childhood obesity, teenage pregnancy and death from stroke, heart disease and cancer. The population is growing by at least 2,500 (mostly younger) people per year and residents from ethnic-minority backgrounds are increasing. GP recruitment problems, while now overcome, have led to variations in the quality of care.

The seeds for ONEL Integrated Care were sown in 2007, when 22 practices in Barking and Dagenham took part in the Unique Care programme. This was based on the US Evercare system of intensive case management of elderly patients.

Barking and Dagenham received £400,000 funding for four new social workers and to incentivise four community matrons. They targeted over-65s, particularly those with COPD.

When Unique Care was evaluated locally, there was an improvement on experience, but there wasn't a major reduction in A&E admissions, or home visits. This may have been down to practices' different interpretations of how Unique Care should be implemented. For example, some practices held multidisciplinary team meetings once every three months while some held them once a week.

We had a stakeholder event in Barking and Dagenham and one of the biggest issues was that people felt targeting over-65s was not enough. Care also needed to be aligned to acute mental health services and community learning disability teams.

The case for change

Ownership of the project by front-line staff was instrumental. We wanted them to say ‘we've got to do things better', instead of being told we wanted it this way.

Health and social care staff were prompted into redesign talks at stakeholder events where they watched videos of patient experiences about gaps in their care – like the woman who left her front door open, never knowing who would turn up next, or the wife struggling to care for her husband with diabetes.

This approach is known as ‘experience-based design' and comes from the NHS Institute for Innovation and Improvement (see www.institute.nhs.uk/ebd).

It was the driver for all the stakeholders to get around the table and to understand the real reason for integrated care – getting the best patient experience and best outcomes. Hearing the patients was an incredibly powerful driver of change.

The deep insight gained resulted in all parties agreeing to restructure and co-locate new teams within, or as close to, general practices as possible, without additional resources. If we'd had to pay, it would have been a costly exercise.

An invest-to-save business case was also successfully put to the PCT to fund new care co-ordinators, at a cost of approximately £200,000 per year – one-fifth of the savings that might be made from prevented admissions and associated costs.

Integrated care in practice

ONEL Integrated Care follows the approach developed under the DH's long-term care QIPP workstream: risk profiling, developing neighbourhood care teams and systematising self-care.

Risk profiling

Risk profiling was carried out using a software analytics tool, which uses SUS hospital data and information from GP systems. Integrated care, using multidisciplinary teams, is a comprehensive intervention so we looked at who was going to benefit most. We decided first to look at the top 1% of patients at risk of admissions.

Looking ahead we hope to expand the target pool of patients to much higher percentages and to achieve even better outcomes. This will be the patients who might not even realise they're at risk, but have high cholesterol, heart problems or undiagnosed long-term conditions. This larger cohort will require a different integrated care team with a strong public health element and involve community pharmacists and the voluntary sector with the emphasis on patient education. For each practice, the number in this 1% group varies considerably with no relation to list size.

The risk profiling does throw up surprises. GPs can have a bias about what patients we think are at risk. In Dr John's practice of 7,000 patients, there are 100 patients that fall into this 1%. Interestingly only 50% of this group had engaged with the practice. Despite us calling them and sending letters, they went instead to A&E on a regular basis and were in and out of hospital.

This shows there are very good reasons for risk profiling. By focusing teams on repatriating these patients into primary care, you are not only achieving cost savings – you are improving quality of life.

These ‘missing' patients might have social issues, they might lack awareness or refuse to acknowledge their illness, or might be oblivious to how health services have changed to offer much better delivery of care.

The risk profiling must be combined with clinical input to secure GP engagement. If a clinician feels someone who is not within the 1% group needs intervention, they can bring them to the team.

Neighbourhood care teams

Once the target group is identified, they are assigned to an integrated care team comprising a GP, community matron, district nurse, social worker and care co-ordinator (as they are known in Barking and Dagenham) or care liaison officer (as they are called in Redbridge and Waltham Forest).

The teams are mostly organised in a hub-and-spoke model. So in Barking and Dagenham, the 40 practices have been split into six clusters. One team is assigned to each cluster, and is usually based in one of the cluster's larger GP premises (or in local community health premises). The team then goes out to each of the practices in the cluster for a two-weekly multidisciplinary team meeting to discuss and agree holistic care plans for patients. If the teams are located in the vicinity of the patient, they are likely to get outcomes more quickly.

The care co-ordinators are recruited from existing NHS staff. The role is mostly administrative (agenda for change pay band four), but nevertheless vital. They are the named person who helps patients navigate various services, educates them on who to contact in a crisis, and updates care plans so a GP can get an up-to-the-minute picture of who a patient is next due to see.

Teams have built strong relationships with other providers, and engage specialist clinical expertise or extra support from the voluntary sector as needed.

The teams mainly provide proactive care to prevent admissions, but for times when patients unexpectedly worsen,

co-ordinators educate patients to contact separate rapid response teams, who in turn can admit patients to community beds as an alternative to acute care.

If patients turn up at A&E or contact out-of-hours services, computer systems for both services can flag up that person as under the care of an integrated team and list the professionals to assist them.

Data and information sharing agreements need to be drawn up and patient consent has to be obtained to allow team members and external providers to access patients' care plans.

Self-care

Improving patients' self-care will form the next stage of the initiative. Currently, the teams are relying on community providers and the voluntary sector to deliver support to patients. Patients are asked to comment on their care plan when it is first drawn up. Eventually patients will be able to see their care plans on a patient portal.

Early results

The early results are encouraging. GPs have commented that patients are happy, that they are not calling the practice as much, there is less workload and they can get social care on board more quickly. There is also a reduction in home visits as the patients feel more supported and are getting what they need.

Hospital admissions in Barking and Dagenham seem to have reduced to an all-time low – two months of data show admissions have gone below the baseline of previous years. But we need two more months before we can confirm this is a definite trend and make figures public. Locally the hospital recently changed its threshold, which increased admission rates to the point where NHS London and the PCTs had to audit to find out why. Factors like this can affect your figures. Results for Redbridge and Waltham Forest should be available next month.

One of the local hospital trusts has now agreed to have a named consultant responsible for ‘frequent flier' integrated-care patients who turn up at A&E. If you are looking for a model that fits every CCG, there isn't one. To borrow a phrase from the deceased Austrian management consultant Peter F Drucker: ‘The best way to predict the future is to create it'.

Dr Jagan John is a clinical director for Barking and Dagenham CCG and integrated care champion for ONEL

Marisa Rose is QIPP project manager for NHS ONEL Integrated Care

60-second summary

Initiative: An integrated approach to managing long-term conditions using the three QIPP primary drivers of risk profiling, care teams and self-care. Videos of patients describing fragmented care were used to get stakeholders to focus on necessary changes

Start-up costs: Invest-to-save case put to PCT included £200,000 to fund care co-ordinators, anticipating 20% of savings to be made from prevented admissions and associated costs

Staffing: Neighbourhood integrated care teams include GP, community matron, district nurse, social workers and a care co-ordinator who helps patients navigate services. Their role is mostly administrative and pay is agenda for change pay band four

Outcomes: Interim figures show a reduction in admissions. GPs report reduction in visits

Contact: Marisa Rose – marisa.rose@onel.nhs.uk

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