Choice, independence and quality of care vital for people living with LD and autism, says new report

More work is needed to ensure some of Norfolk’s most vulnerable residents can get the care they need closer to home, according to a new report.

Healthwatch Norfolk looked at residential care for those with learning disabilities and/or autism during a year-long study entitled My Views Matter

This was triggered by the deaths of three patients at Cawston Park Hospital in North Norfolk between April 2018 and July 2020 having suffered neglect and abuse.

Each of the patients was in their thirties and they all had learning disabilities, and a key finding of reports into the tragedy was that views of patients and their families were systematically ignored by the hospital.

Healthwatch Norfolk was concerned that this was happening and decided to look at this issue in more detail with much of the feedback focused on choice, independence, and quality of care for residents and their families as well as highlighting issues with the system.

John Spall, project manager for My Views Matter, said: “We have not found that the problems present at Cawston Park are widespread in the sector in Norfolk. In most cases, people have avenues for having their voices heard, and most relatives felt that they were being listened to well. However, the people we spoke to also identified several important areas for improvement.

“One key problem that some families and service users told us they experienced was the shortage of what they considered good quality residential provision in Norfolk, and/or of suitable placements for their specific needs. In some cases, this meant that people’s choices were considerably constrained.

“There were a number of reasons that people had difficulties finding a placement that was right for them. For some people it was a question of finding a service that could meet quite specific sets of needs. One relative describes this as like ‘trying to thread a needle’.”

There were positive findings too around the quality of staff relationships, support around activities, and feedback from families praising the support their loved ones receive.


The key recommendations from Healthwatch Norfolk based on the feedback it received were:


  • Providers need to encourage staff to develop relationships with residents based on shared interests, balanced sharing of personal communications, and empowering residents, which leads to longer-term deeper relationships.


  • Families valued managers who were well-informed and engaged in the everyday life of the home and the people who live there. Managers should ensure a regular presence in the everyday life of the home and avoid delegating this to deputy managers or other senior staff.
  • Clear and honest communication was valued especially when there are problems and disagreements. Transparency, regular communication, and open-ness can avoid damaging conflicts.


  • More could be done to consult people about the decoration of bedrooms and communal spaces to help people influence the look and feel of where they live.
  • Providers should make sure people are participating in the upkeep of the home as much as they can as this opportunity did not always filter through to residents.


  • Providers should take care to constantly encourage people to try new activities, rather than take a refusal at face value. The people who had broadened their horizons and tried new things generally reported being most happy.
  • Where people have substantial one-to-one support, attentive support should be given to people’s daily activities, using creativity to allow them to follow their interests both in the moment, and to invest in longer-term

interests over time. For those residents who are more independent, they should be encouraged to follow their own interests.

  • Where people have more capacity for independence, homes should not rely on communal activities to keep them happy, but invest in developing their independence skills and confidence, so that they can follow their own interests with minimal staff support.

Friendships and relationships

  • Relatively few people that we spoke to had managed to maintain friendships that they had established at the previous places they lived. This suggests that homes could do more to support people to stay connected with older friends.
  • Only one person we met was in a romantic relationship. This suggests that people are not given the support that they need to develop romantic relationships.
  • Providers should seek more opportunities for residents to form friendships with non-disabled people outside the home. More thought could be given to develop programmes like gig buddies, to provide more opportunities for barriers between disabled and non-disabled people to be broken down.

Homes’ interactions with families

  • More support could be given, as relatives age, to help people to visit their elderly relatives, when they are no longer able to visit their family member in the home.
  • Homes should ensure that, especially when relatives have requested changes to someone’s care, that these are followed up consistently, and that relatives receive regular updates as to progress on making the changes.
  • Providers should also take steps to reassure relatives that, if they complain, that no adverse consequences will ensue, for their family members, or for their access to their family members.

Recommendations for the Health and Social Care system in Norfolk

Many of these are already being addressed or there are plans to deal with them. They include the lack of availability of care for people with complex needs, and the shortage of care workers.

Some are mentioned in the recommendations above, but some relatives are paying for day services which Norfolk County Council declined to pay for, but which residents and their families found beneficial.

The research

To find out people’s views, the Healthwatch Norfolk team visited 21 residential homes and four secure inpatient units talking to 94 service users and 58 family members.

It also spoke to twenty-five professionals working in the sector and ran focus groups with Opening Doors, a Norfolk-based user-led organisation which supports people with learning disabilities and autism, speaking to over 40 people at those.

To ensure the research was as rich as possible, it was gathered through a mix of Enter and View visits, where up to three of the Healthwatch Norfolk team spent up to three hours talking to residents asking questions in different ways, ensuring any answers are backed up with evidence, and getting additional information from loved ones and staff members.

The Healthwatch team was made up of people experienced in Enter and View visits, community team members who are used to chatting to people, and experts-by-experience who have had lived in these kinds of residential settings as well as being used to engaging with people and carrying out research.


Alex Stewart, chief executive of Healthwatch Norfolk, said: “The publication of this report marks the end of a lot of hard work by our team. It is heartening that the worrying findings about care at Cawston Park are not echoed across Norfolk and we came across some good practice.

“Around a quarter of the people we spoke to wanted to see changes, however, and there were significant concerns around the high turnover of care staff and a shortage of suitable care placements.”

“The report gives us a clear idea of what good practice looks like from the point of view of service users and their families as well as more work that can be done around helping residents feel more independent when it comes to developing their interests and socialising more therefore improving their quality of life.

“This report marks the beginning of a journey which will continue as we continue to work with commissioners, providers and most importantly residents and their loved ones to ensure the care they receive continues to improve.”


You can find out more plus download copies of the full report, summary report, Easy Read summary report, and a best practice guide by clicking here.