Growing Older Planning Ahead: Combined Regional Healthwatch Report

Executive Summary

The North East and North Cumbria Integrated Care Board (NENC ICB) is the statutory NHS organisation which is responsible for developing plans for arranging for the provision of health services in a geographical area – in this instance the Tees Valley.

The purpose of this report is to provide insight to the NENC ICB, to give them a greater understanding of the needs of people with a learning disability, aged 40+, so they can improve the planning process when families can no longer support their family member to stay at home.

We asked carers, those they care for, and professionals who support them, to tell us what is important to them, and what support they need to live a happy and healthy life.

All three groups of cared for, carers and professionals agreed the best outcomes occurred when appropriately trained support staff were available to help individuals live an independent life and there was help in maintaining a good social network of friends and family, including suitable transport and good community facilities to meet people with similar interests and needs.

To help NENC ICB achieve the best outcomes, we have offered seven recommendations based on our insight, in the following areas:

1. Adhering to NICE guidelines.
2. Good communication.
3. The importance of location.
4. Timely, clear, and phased transition planning.
5. Regular person-centred reviews.
6. Building on the good practice current services offer now.
7. Focused training and support packages.

We look forward to discussing this report with representatives of the NENC ICB and individual local authorities, to ensure the voice of those who are impacted by this service continues to be listened to.

On behalf of Healthwatch Darlington, Healthwatch Hartlepool, Healthwatch Middlesbrough, Healthwatch Redcar & Cleveland and Healthwatch Stockton on Tees.

Survey findings: Summary

What matters most to people in the Tees Valley

The findings in this section are based on responses to the survey which was co designed with the North East Commissioning Support team, either through completion of the survey or taking part in focus groups and workshops centred around the survey questions.

This engagement exercise gave us the opportunity to have one-to-one conversations with a wide variety of people including carers, service users and professionals to gather information to support the future development and planning of services for those with a Learning Disability.

This report highlights the challenges facing those groups in being able to effectively plan and support individuals with their future care needs as they grow older. Some people we spoke with found this to be a particularly painful and difficult subject; some carers were apprehensive about sharing their concerns openly and honestly in case there were implications in the short term around their ability to care for their loved one. Our engagement teams reassured each participant of the purpose and need for this work, but it is worth noting this understandable concern of carers as this work is progressed.

The themes throughout each group were consistent, as were the responses from each of the three groups: carers, cared for, and professionals. They echo the NICE quality standards which provide advice about care and support for people with learning disabilities.
‘My family helps with problems where I live. They are stepping in to help me find a better place to live in the future’. Participant, Middlesbrough

The cared for person told us what was important to them:

• Living in a nice house in a nice quiet area, with nice neighbours.
• Being nearby family, friends, shops, with good transport links.
• Independence with the freedom to make their own choices and be listened to and understood.
• Feeling safe.

What the cared for person told us they needed help with:

• Administrative tasks such as filling in forms, managing their money and benefits and making ‘official’ phone calls for administrative reasons.
• Transport to get to and from activities or appointments.
• Household tasks such as cleaning the house, washing clothes, making food and drinks and shopping.

The cared for person told us that to live a healthy and happy life as they get older, they need help and support in the areas listed above as well as:

• Support to manage their health.
• Emotional support when they feel anxious about life.
• Help in maintaining a good social network of friends and family.
• Good community facilities to meet people with similar interests and needs.

“I personally feel that people with a Learning Disability should be encouraged when they turn to a young adult to start thinking about and exploring the idea of living away from their parents / carers to promote their own independence more and I don’t feel like they always get the opportunity to, and then it comes to a crisis point of the parents becoming elderly and unable to look after them anymore or worse and then the process is harrowing for all involved.” 

Cared for, Stockton on Tees.

Carers told us they worried about the person they cared for, as they get older, being able to:

• Manage their health needs.
• Live independently in a safe area.
• Manage financially.
• Have appropriate social opportunities and not be lonely.
• Have suitable access to appropriate support services.
• Suitable accommodation.
• Being understood and accepted (not getting in with the ‘wrong crowd’.)

In summary, carers told us they worried about the same areas that the cared for participants told us was important to them, and where they needed support to live a happy and healthy life.
Despite their worries, not all carers knew who to speak to about their concerns. Most did want to be included in future planning to ensure professional advice was obtained and understood, and generally support their cared for person in discussions and decision making.

There was a mixed response from carers regarding awareness of available services to support the cared for as they got older.

The support they would like to see was:

• Financial.
• Healthcare.
• Family support service / social care.
• Day care.

Improvements carers would like to see were strengthening social care support, more support for carers, more financial and legal support, improved medical resources, and more diverse accommodation options.

Included in this report as ‘Appendix two’ is a case study from two 70 year old carers for their daughter, illustrating the importance of involvement of carers in decision making for optimal outcomes.

“Older people with a learning disability living with family are frequently forgotten about unless there are problems or concerns with their health, behaviour, home situation etc. It's usually those who are well known to social services that get all the attention. Families just get on with it without a fuss until carer breakdown happens, or death / hospitalisation of a carer / family member / parent. Then it's crisis management. Lack of appropriate accommodation. Still in the Dark Ages in Darlington. So much more can be done.” 

Carer, Darlington.

There was no universal clarity within the professional responses around the current process for moving older people (aged 40+) with a learning disability into a new home. Some were confident they were familiar with the process, and some were not.

There was consensus amongst professionals that involving the person and their families/carers in the planning, joint working between services and planning ahead worked well. This supports our insight that carers want to be involved in planning care. Professionals told us that more choice of appropriate accommodation, more resources in terms of trained staff with better communication between all parties concerned in the move were areas that needed improvement. Again, this supports the themes from carers and cared for groups.

The professionals told us what is working well:

• Person centred support.
• Social worker involvement in the process.
• Care assessments and Multi-Disciplinary Team (MDT) meetings.
• Visits to support transition.

The professionals told us gaps in services were:

• Lack of trained staff.
• Lack of choice / lack of availability of suitable housing.
• Lack of understanding of needs.
• Lack of available accessible information.
• Lengthy placement process.

In an ideal support service professionals told us they would like to see improved communication, more trained support staff, a better process, greater choice and more peer and community support.

In summary there was consistency across the 3 surveys which reveals a clear idea of what is important to the cared for, and what they need support with to live a happy and healthy life. This supports what carers tell us are their greatest concerns for their loved ones as they get older – that this level of support and care can be maintained when they are no longer able to provide that care. We also have clarity from professionals about what they know to work well and the improvements that can be made to minimise the gaps in care.

“The process MUST ALWAYS be ‘Person Centred’ and continuous. This ensures a person’s ‘best interest’ is not a one-off decision but a constant process as they live and grow. Those with severe learning difficulties have no less a right to recognition of life-long learning!” 

Redcar and Cleveland participant.

Recommendations

Our engagement has highlighted areas that could help to improve transition pathways. Valuable feedback received has informed the following recommendations:

1. NICE guidelines: Published in 2018 and still current, these five quality standards of care should be used as the basis of any service pathway. They resonate with the aspirations of all three groups included in our survey, requiring that those with learning disabilities be listened to, feel free to say what they need and want from life, have a dedicated contact to help with questions or provide support in interactions with services, help make plans for changes, have an annual health check, and specific support for hospital stays.
2. Communication: A clear service pathway, with timely and appropriately communicated information in the planning process is key to supporting carers, service users and professionals in approaching difficult conversations confidently, with awareness of the options available.
3. Location. The ability to stay within the locality, access local services, and have regular contact with family and friends was seen as one of the most important aspects in the planning process. Consideration must be given to ensuring local housing strategies are developed to address the shortfall in appropriate housing options for adults with learning disabilities, to maximise opportunities for supported independent living.
4. Clear and phased transition plans. Input from service users, carers and professionals during the transition is vital to ensure a co-ordinated approach that clearly identifies the needs and wants of the individual. Documentation needs to be consistent and easy to read to ensure ongoing support is appropriate to the needs and wants of the service user. Conversations and preparation for independent living should not be left until a time when current living arrangements are no longer tenable, thus reducing the potential for difficult transitions which may lead to personal crisis. For example, this could include planned visits to established residential facilities to help gain insight and understanding into future options.
5. Review. It is important that regular person-centred planned reviews take place to ensure that service users feel happy, safe and have choice and control in their lives.
6. Good practice. There is current good practice which is working well for all parties. Each local Healthwatch will be happy to work with the ICB to highlight the good practice we are aware of, to help inform the future planning and delivery of services.
7. Training and support packages: To increase awareness and skills in areas such as budgeting, benefits, employability, food preparation and healthy living, training and support should be made widely available and promoted via social workers, care providers and health professionals. This will support key skills development and confidence building need for successful and supported transitions.