Recommendation 10 (involvement of people and their families)
True person-centred care is key to ensure that people can live the lives they want. It is about ensuring that people, their families and advocates are listened to and involved in planning their care and support. It is about treating them with respect and as equal citizens. This is key to ensuring that people receive the right support at the right time.
If recommendation 10 was fully implemented:
- people would be involved in developing their support and care plans. This would be central to the care they receive
- families and advocates would also feel that providers and commissioners listen to them and involve them in decisions
- people, their families and advocates who have concerns about services would be able to escalate them easily to the providers and commissioners
- people who need the support of an independent advocate with the right specialist knowledge would be able to receive it.
Has recommendation 10 been achieved?
We consider that recommendation 10 has been partly achieved
Truly person-centred care that is co-produced by people, their families and advocates is essential for people to live positive lives. While there are examples of this, too many people are not experiencing person-centred care, especially within hospital settings.
Action needed:
- All services need to ensure that person-centred care is co-produced with people and their families, and services should be accountable for this.
- More high-quality advocacy needs to be made available to everyone who needs it.
- Services should listen to and act on the concerns of people, their families, and advocates to ensure that people are receiving the best possible support.
What we are seeing and hearing
We can see from the experiences that people have told us about in this and previous reports that people’s care is often not person-centred. People and their families or advocates have not been central in developing their service, in finding the right place to live and the right people to support them, or in developing their care plans. We therefore made recommendations to improve this.
We know that in some services this is happening. However, people are often not experiencing true co-produced person-centred care. Without this, people are more likely to hit crisis point.
The data for people with a learning disability and autistic people, taken from the Assuring Transformation data set for December 2021 finds that, for 59% of people with a learning disability and autistic people who were in hospital, it was recorded that the family was involved in discussing the care plan. For another 7% of people, the family was not involved at the request of the person. However, for nearly 1 in 10 people (9%) the family was not involved and for nearly a quarter of people (23%) it was not recorded whether the family was involved in discussing the care plan.
Below is an example of a home where we have seen true person-centred care where people are empowered to be able to live the lives they want to.
This is what we should expect to see in all services, across both health and social care.
Example of person-centred care in a care home
One person told our inspectors, "It's not a home, it's my home. I would live here for 20 years if I could!"
People said they were respected, encouraged, and emotionally supported, and commented on how much choice, control, and independence they have now.
Staff were excellent at exploring different ways to communicate with people, so they could express their needs and get their opinions heard. One person was supported to take complete control of their person-centred review, which included healthcare professionals. They were supported to write up the review outcomes and goals they wanted to work on in the future. The person told us they liked to see their 'own language' in their reviews, unchanged for health professionals.
The shared vision of a highly successful and inclusive service was driven by exceptional leadership. People, their relatives and health professionals thought the care home was a fantastic place to live. Comments included, “They've never given up on me”, “Compassionate professionals”, “Nothing is unachievable” and “Miracle home”. Another person told us, “The home and staff have been amazing for me. When I arrived here my whole life was in a meltdown, I feel like they saved me.”
People and their families still tell us that it is not always easy to raise and escalate concerns to providers or commissioners. Where they do, they can feel labelled as difficult or persistent complainers and are concerned that it will have a negative impact on how providers see and treat them or their loved one.
NHS England and NHS Improvement (NHSE/I) have told us that they are committed to co-production and involvement of people with a learning disability and autistic people and their families in the design and delivery of services and try to embed this in their national strategic development and work. They have also told us they remain committed to Ask Listen Do and expect all local services, systems and regions to have clearly articulated escalation processes.
Advocacy
In our Out of sight report, we said that an investment and an action plan should be developed to ensure that all autistic people, people with a learning disability or people with mental ill health have access to an independent advocate. This would need adequate resourcing and specialist training for advocates.
We also said the action plan must expand on the recommendation of the Independent Review of the Mental Health Act and also apply to those who are informal patients and those receiving social care who have their liberty restricted under legislation.
The Assuring Transformation data from December 2021 showed that most autistic people or people with a learning disability in hospital had access to an independent advocate. The data also suggests the quality of advocacy is improving, with 79% of organisations providing advocacy holding the Advocate Quality Performance Mark (QPM) in December 2021 compared to 71% at the beginning of the year. The QPM is a quality assurance assessment for providers of independent advocacy that is based on the principles contained in the Advocacy Charter and the Advocacy Code of Practice. However, this does not mean that everyone has access to advocacy.
When we spoke to leaders of advocacy organisations, they said that there is:
- a lack of resource for fully effective advocacy
- a lack of access to advocacy when a person is in seclusion or segregation
- a need for better collaboration with family members
- not enough staff skilled in advocacy, or in advocacy for people with autism and a learning disability
- no clear distinction at CQC between statutory and private advocacy provision in our reports.
NHSE/I have told us that £4.5 million in funding was allocated in 2021/22 for a review of advocacy for people with a learning disability and autistic people. The findings from this review will be shared with the Building the Right Support Delivery Board, which is run by the Department of Health and Social Care.
Advocacy providers have been concerned about the lack of funding for the provision of advocacy for a long time, and progress has been too slow.
Recommendations 1 and 8 (right home, right support and bespoke services)
People with mental ill health, a learning disability and autistic people want the same as everyone else – a home of their own.
Supporting people to remain in the community means having appropriate housing, with the right support available at the right time. It means working together with people and their families to develop true person-centred services with the right support in place. This helps prevent family or placement breakdown and avoids hospital admission.
When people are admitted to hospital, not having the right housing provision can lead to people being in hospital longer than necessary. To address this, we made recommendations for the government and commissioners to ensure that there was more of the right type of housing available, in line with our guidance, Right support, right care, right culture and the government’s guidance, Building the right support.
If recommendation 1 and 8 were fully implemented, people would:
- experience more joined-up care
- have their own single, personalised budget, agreed across education, health, and social care
- access the right support at the right time across education, health, and social care, including specialist community teams that understand their needs
- have access to the right type of housing and support to meet their needs in their local communities or communities of their choice
- be less likely to be in inpatient services
- live in a home that is bespoke, in the community of their choice with person-centred care.
Have recommendations 1 and 8 been achieved?
We consider that recommendations 1 and 8 have not been achieved
Not enough people are able to have a home of their own with the right support in place.
Action needed:
- People should be able to move to ordinary homes on ordinary streets with the right support and only be in hospital when receiving treatment.
- People’s homes and support must be developed through co-production with people and their families.
- People’s rights must be promo ted to ensure person-centred support and true citizenship.
What we are seeing and hearing
People with lived experience, their families and commissioners continue to tell us that there is not enough provision of housing with the right support available. The Local Government Association tell us that there isn’t enough of a joined-up approach between housing, social care and health. This is leading to some housing departments not being compliant with the Equality Act 2010 and duties to make reasonable adjustments to enable access to housing. In addition, some housing departments are not planning for any specific housing needs of people with a learning disability or autistic people in their local community housing plans or, when they do, they do not consider access to an ordinary home on an ordinary street.
Data for April 2020 to March 2021 from the Adult Social Care Outcome Framework shows that 78% of working-age adults who were receiving long-term local authority support for a learning disability were living in ‘settled accommodation’. This increased by one percentage point on the previous year. Settled accommodation is where a person can reasonably expect to stay as long as they want, as opposed to accommodation that is either unsatisfactory or where residents do not have the security of tenure, such as care homes.
Only 58% of working-age adults who were receiving secondary mental health services were living in settled accommodation at the time of their most recent assessment, formal review, or other multi-disciplinary care planning meeting. This figure had not changed from the previous year.
There is considerable regional variation in the proportion of adults with a learning disability or mental illness who live in settled accommodation, with the West Midlands having the lowest level.
The lack of suitable community housing alongside the lack of adequate community services to provide care and support, means that some people’s needs aren’t being met. Some people cannot be discharged from hospital and others are moved to inappropriate settings, which are more likely to lead to re-admission to hospital. When we have taken enforcement action against services that are not providing the right support, we have found that closing these services sometimes poses difficulties, as it can be hard to then find the right services due to the lack of suitable housing and support available.
The Assuring Transformation data published by NHS Digital shows that nearly a quarter (23%) of the 65 autistic people or people with a learning disability who were admitted to hospital in December 2021 were re-admissions of people who had been discharged within the last year.
Since the abuse scandal at Winterbourne View hospital, successive governments have promised and missed their targets to reduce the number of autistic people and people with a learning disability in inpatient units. The recent report by the Health Select Committee in July 2021 further highlights the lack of community provision for autistic people and people with a learning disability to be able to live fulfilled lives in the community.
Individual budgets
In our Out of sight report, we called for a system where budgets across education, health and social care can be pooled to meet individual needs. We often hear stories from people who tell us that there are delays in accessing the right support due to discussions and disagreements on which budget this should come from. This is often why people are moved to inappropriate settings in the community, as commissioners sometimes are under pressure to put budget before people’s needs. This short-sighted approach has long-term costs, as it can contribute to a crisis that leads to hospital admission.
This is then repeated when people need to be discharged from hospital as health and social care can struggle to decide who will be responsible for the different costs of people’s care.
At present when people are in hospital, local authorities have no responsibility for payment. This does not give them an incentive to support people to be discharged to community placements, as it will then come out of their budget. People who have been detained under certain parts of the Mental Health Act are entitled to section 117 aftercare which can help them to access community support. However, as reported in our Monitoring the Mental Health Act in 2020/21 report, people do not always manage to access this.
The current funding system must be tackled and replaced by a system that ensures a person’s budget follows them between services. The Health Select Committee outlined in their July 2021 report concerns regarding the current funding system. The money used to keep people in hospital needs to be reinvested in appropriate community support and housing to enable people to live the lives they want where they want.
Next page
People’s experience of hospital care