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Dementia Palliative Care Teams

Volume 830: debated on Thursday 15 June 2023


Asked by

To ask His Majesty’s Government what plans they have to expand the use of dementia palliative care teams in England in accordance with the model introduced in Derbyshire.

My Lords, I beg leave to ask the Question standing in my name on the Order Paper and declare a personal interest, as I have a relative who is cared for by the Derbyshire palliative care team which is as described in the Question.

The Derbyshire model is recognised as an example of best practice. The Derbyshire palliative care service toolkit has been widely shared by NHS England, which encourages regions to adopt good practice. Resources from the toolkit have also been published on the FutureNHS platform. It is a superb example of how better integration of the excellent services already available, not always requiring more funding, can have a positive impact on communities.

My Lords, I am grateful to the Minister for that very positive reply, with which I absolutely concur from my own experience. It is good to have the chance to say something positive about people working in the NHS at a time when it is under such great pressure.

As all noble Lords know, dementia is a dreadful and deeply distressing disease, or set of diseases. One in three of us will experience it and almost all of us will be affected, as family or as carers. It is a very complicated process that people have to go through. One of the issues I want to ask the Minister about is co-ordination of care and the help that is available to people. People looking after people with dementia need help with medication, with incontinence, with devices and aids, with falls, with hospital clinics and with a whole range of different issues, coming from primary care, social services and hospital care. The dementia palliative care team in Derbyshire provide the co-ordination. What needs to happen in cases where there is no such team? How can that care be co-ordinated or does it all land on the principal carers and the spouses and partners of the people concerned?

My second question is—

Sorry. I note the Minister’s point about the excellence of this particular team and the intention to spread the idea. How far do the Government think it will spread and be adopted in other parts of the country over the coming two or three years?

I thank the noble Lord. I have an auntie with dementia in care in Derbyshire. The noble Lord is correct that it is a perfect example of a wraparound service that takes in all the facilities that people need. The intention is that we want to spread that everywhere. It is the responsibility of each ICB to set the right commissions in their local area, but we are spreading knowledge of the dementia model as far as we can. A big example is that we promoted it at the recent national clinical excellence celebration day in the Midlands.

My Lords, I am not sure the Minister actually answered the question about where co-ordination happens, which is the essential part of this. He will know that much care and palliative care for dementia patients and their families is provided in the voluntary sector and by charities. What support can we give to charities, which often are acting in a co-ordinating role? Can the Minister update us on newspaper reports that his department intends to recruit an army of volunteers to help solve the social care crisis?

The voluntary sector is a key element of this. On behalf of the department, I thank it for all the work it does. The direction of travel is very much to engage the sector and enlist its support as much as possible. The ICBs do the commissioning, and Derbyshire is a fantastic example of commissioning all the different strands, including the voluntary sector, hospices and palliative care to deal with clinical need. It is an excellent example of how to do it well and one that we need to spread everywhere.

My Lords, this service is patchwork, yet the demand is across the country. What can NHS England do to ensure that the unmet need for palliative and end-of-life care for people with dementia is met?

First, we were very upfront about it; part of the Health and Care Act 2022 is that the ICBs commission palliative care. Secondly, it is part of the six major conditions strategy. It is a major cause of death; about 11.4% of all deaths are caused by dementia. It is fundamentally the responsibility of the ICBs but we at the centre are making sure that the ICBs are commissioning in the way they need to.

My Lords, I very much welcome the work that is being done in Derbyshire and, quite rightly, we want to see it commissioned elsewhere across the country. My question follows on from that of the noble Lord regarding the NHS board. What is it doing to evaluate where these kinds of proposals are being developed elsewhere? Unless it does this, and can demonstrate that it is doing this and providing guidance, we will not get the excellent service that residents in Derbyshire are receiving in more deprived areas, such as places in West Yorkshire and so forth.

We have developed the dementia palliative care toolkit, which we are spreading around all the ICBs. Health Education England has developed an end-of-life care training programme, which is being taken up. Derbyshire has been a key part of the efforts as well, with its own programmes. It is very much our responsibility to make sure that the ICBs, which by law have to provide these services, are providing them to a high standard.

My Lords, I declare my interest in palliative care and as vice-president of Marie Curie. When are the Government going to produce a strategy for these ICBs to commission against, and against which the provision of palliative care can be measured across the country? The evidence at present is that it is extremely variable. While toolkits have been rolled out in some areas, that has not happened everywhere, and some ICBs seem to have remarkably little commissioning on the table working with the voluntary sector, in particular, and local authorities. I was appalled to see the draft major conditions strategy, in which palliative care for people with dementia is only one short phrase rather than a distinct paragraph.

Dementia is an important part of the major conditions strategy and obviously there will be more coming out of that going forward. As I said, the Health and Care Act made the ICBs firmly responsible. Some are excellent examples, such as Derbyshire; for the others that are not, it is very much our responsibility in the centre, and I include Ministers in that. I have mentioned before that each of us has six ICBs that we look after, and part of our job is making sure that they are commissioning to the standards they need to.

My Lords, the ONS figures showing that dementia and Alzheimer’s were the leading cause of death last year make it even more urgent to get dementia palliative care right. Given average life expectancy in care homes, what steps are the Government taking to ensure the Care Quality Commission has sufficient oversight of end-of-life care for people living with dementia?

It is absolutely one of the things that it has to do. We are at the forefront of this. We are backing the Dame Barbara Windsor Dementia Mission, and have doubled the funding to £160 million to make sure we are doing more research in this space. There is a lot more to do but there are a lot of good examples of work as well.

My Lords, to go back to the voluntary sector, many churches are working on becoming dementia-friendly churches as part of dementia-friendly communities. How might this spread out in developing dementia-friendly communities as a whole as part of this support?

As I have tried to say, it is a full community response, which I know the Church is very much part of, and I am grateful for the work it does within that. That is why I keep going back to the Derbyshire model. It is an excellent example which has managed to pull all these strands together. Our job is to make sure that that good practice is disseminated everywhere.

My Lords, I draw noble Lords’ attention to the recent research report from King’s College London about better palliative care and end-of-life care for those affected by dementia. It shows clearly the cost-effectiveness that can be achieved and the reduction in the use of in-patient hospital beds. I declare that I am on the NHS Executive and am pushing for this. What can the Government do to ensure that ICBs actually take this forward?

As I said, we think that the ICBs are the right place to manage this at a local level, but it is our responsibility from the centre to make sure they are delivering on that. I personally have seen good examples: my father was cared for at home, with palliative end-of-life care, and I know how happy he was to be able to do that, so I totally agree.