Why we did the research
For the increasing number of people who die at home, there is inadequate data at a national level to understand how well services reflect population needs and the quality of care people receive. We set out to find what information about care quality and needs exists at a local level, and how it is used.
We focused on the role of NHS commissioners, including how they work with social care commissioners in local authorities. Commissioners have a unique view across the complex mix of specialist and generalist health services and social care involved in supporting people who die at home (see Figure 1).
What we did
We reviewed literature and engaged with stakeholders to build up a picture of end-of-life care at home. We then asked recently bereaved families and carers to help identify the issues that we should focus on.
Families and carers told us that good quality end-of-life care includes: consistently caring, as well as clinically competent, staff; good communication and involvement, for example, in care planning; information about what to expect, what services are available and how to access them; and seamless, co-ordinated care that adapts as people’s needs change.
If the services available are to correspond to local needs, they said commissioners should: reflect the specific needs and preferences of people from different ethnic minorities and religions; involve people in saying what is needed; and take an overview of all the services as a whole and how well they fit together.
We interviewed commissioners from 15 urban and rural areas with differing levels of deprivation across England. We presented our findings back to the stakeholders, families and carers to help us understand their implications.
What we found
How commissioners measure and monitor care quality
Commissioners we talked to understood high-quality care at the end of life, but mostly did not have specific quality assurance measures for people who die at home and had little or no information on end-of-life care in generalist services.
Commissioners often relied on whatever data providers were able to share with them. As a consequence, they had a fragmented view of quality in individual services rather than one that reflected people’s experience of the care pathway as a whole.
They used process indicators of care quality for people who die at home, such as the number of hospital admissions in the past three months of life, and did not routinely collect data on the outcomes of care or people’s experiences. Although local authorities had mature systems for quality monitoring in social care, they were not joined up with quality monitoring in health care in any of the areas we spoke to.
How commissioners use data to understand population need
Most commissioners did not have a complete view of needs across their local area. Need was often understood based on levels of demand reported by providers for each service separately, making it difficult to build a complete picture or identify unmet need. Only one place in our sample was making extensive use of the available data across services to understand local needs, and none of the commissioners described using national resources available for needs assessment. Some areas lacked basic data such as accurate palliative care registers.
How commissioners identify and address inequalities
Commissioners recognised the importance of reducing inequalities in end-of-life care. However, only one commissioner in our sample was taking steps to collect more data on inequalities, and none had started actions to reduce them.
New roles for commissioners
Our research took place just as ICBs were established. Commissioners’ roles were starting to become more facilitative and strategic, convening providers to work together on system-wide approaches to improving services.
What this means
Commissioners need to improve their ability to measure and assure the quality of end-of-life care at home, including through better information about people’s experiences. They should make better use of data to assess current and future needs, and to focus on inequalities.
These improvements are feasible because the ways in which commissioners’ roles are developing, the creation of ICBs, current national priority for end-of-life care and staff motivation after experiences in the Covid-19 pandemic, all combine to create a moment of opportunity. Our report makes recommendations for commissioners, ICBs and national bodies to ensure that the opportunity is taken.
Really pleased to see this report - such an important & priority care area for us all whether personally, professionally or both. My penultimate job in the NHS, overlapping with my migration to social care via buying care homes in Devon, was end of life care commissioner lead an area I feel still both hugely proud of the work & progress we made in Devon but equally still massively committed to promoting in our work in our care homes.
Care homes I will continue to argue are homes for not far short of half a million people in this country and the expertise in supporting people to die a natural death enveloped in passionate, kind, dedicated, skilled, loving care. This in partnership with family loved ones, staff, our NHS and sometimes palliative care specialists as well as the person in second to none.
The 66 page report does acknowledge and mention care / residential homes from time to time and in fairness I suspect the ‘care at home’ title really was meant to be more about the very challenging difficulty of enabling a person to die a ‘good death’ without the benefit of 24/7 wrap around care able to be provided in a care environment.
My 2 essential questions all of that said are:
1 - who will read this report ….. and like me, read it again & share it with others ?
2- how will the authors and intended ICS / ICB. / ICP / PCN / Local Authority recipients convert the recommendations into tangible & measurable early actions ?
I’ll watch with interest locally to see how the report ‘lands’ and I’ll prompt colleagues to read and extract actions too
Thanks. Keep up the great work team
My issues of concern are:
1. Reducing the length of ill health in the final years.
2. The need for appropriate housing for older people which includes the provision of publicly owned sheltered accommodation with dining facilities and health & social care on site.
The percentage of the population over 65 has increased from 16.4% to 18.6% in the last ten years so we should be focusing on building appropriate older people housing including for those with dementia in appropriate locations. Supported tenancy accommodation in the public sector in each locality similar to the McCarthy & Stone model though with dining facilities and health and social care on-site are recommended.
Such schemes would result in:
a. A reduction in the numbers needing to go to A&E and speeding the discharge from hospital saving NHS and social care money.
b. The partners could continue to live together and support each other.
c. A reduction in the numbers going into care homes would save council money for residents unable to pay the full cost. Too many are being discharged from hospital and sent direct to nursing homes due to a shortage of supported tenancies.
d. Far quicker reallocation of the accommodation in the public sector as compared with the private sector, where owners are required to continue to pay service charges and council tax until the property is sold ie after moving on to a nursing home or dying. Some providers require sellers to pay up to 20% of the sale price to them. Some properties take extended periods to sell including a delay complicated by probate.
Such schemes in the public sector should be assisted by the ability of local authorities and housing association to be able to borrow the money. Additionally, in the case of Greater Manchester the local authorities should be encouraged/required to sell their shares in Manchester Airport plc which owns Manchester, Stanstead and East Midland Airports to release the billions tied up for reallocation for housing use. They should be given exemption from the capital gains tax.
The release of single occupancy homes with the transfer to sheltered accommodation would help to release homes for families and would increase the council tax income particularly for those living in four bedroom houses. It should, however, be considered that older owner occupied could decide to be in accommodation they own as moving to a publicly owned home would lose them the Inheritance tax relief of £175,000 and the receipt could impact on their state benefits.
3. The establishment of a clear organisational structure covering health and social care that is accountable to local people. It is now eight years since health & social care was delegated to Greater Manchester starting with a £6.3bn budget. Jon Rouse the initial Chief Officer of the Greater Manchester NHS Integrated Care Partnership gave a talk in the early days when he spoke about how data can help Greater Manchester optimise the impact of public services on population health. Delegation does mean that there should be some openness, local responsibility and accountability after eight years on quick wins and synergies producing savings which could be recycled into improvements and better pay. Sadly there is an absence of accountability in Greater Manchester.