Home » What is PPI? » Involvement in practice » PPI Case studies » Future planning for older people caring for adult dependents with a learning disability

Future planning for older people caring for adult dependents with a learning disability

In 2012 the Patient and Client Council (PCC) was approached by a small number of elderly carers who were caring for adults with a learning disability. They were concerned for the future of their loved ones when they could no longer care for them. As a result of these conversations, the PCC worked to understand the needs of elderly carers with a view to championing change together.

This project has involved extensive engagement between service users, carers and those with responsibility for planning and delivery of care and accommodation. This engagement took place both at local HSC Trust level as well as at regional level with a view to agreeing how best to support families to plan for the future.

At what level did the PPI take place?

  • One to one;
  • Service development/delivery;
  • Commissioning/policy.

PPI helped the project to

  • Improve quality;
  • Inform commissioning;
  • Increase ownership.

Background

A series of learning sets and workshops were held across Northern Ireland to facilitate an opportunity for carers and key stakeholders to explore the issues of future provision requirements of caring for adults with learning disabilities in detail. It provided an opportunity for older carers to engage directly with policy makers and decision makers in an open and transparent way. Collaboration was encouraged between attendees to identify innovative and practical solutions for future planning. People were invited to attend local learning sets to work collaboratively with key stakeholders to find solutions to their needs. This project was aimed at supporting carers to engage with organisations across HSC services, as well as the Northern Ireland Housing Executive, to understand the extent of the problems and to facilitate discussions that could lead to practical solutions to support ageing carers.

Aim of involvement

In 2012, the PCC was approached by a small number of elderly carers who were caring for adults with a learning disability and were concerned for the future of their loved ones when they would no longer be able to care for them. As a result of these conversations, the PCC worked to facilitate improved understanding of the needs of elderly carers with a view to championing change together.

This was carried out in line with the PCC’s statutory duty to promote the involvement of patients, clients, carers and the public in the design, planning, commissioning and delivery of health and social care.

Through listening to the experience of carers, the PCC recognised that the needs of the adult with a learning disability were being met in the short term, but there was no focus on their future needs when the carer would no longer be able to care for their loved one. This was something which concerned carers.

This project enabled carers to collaborate with key stakeholders to discuss areas of concern and identify practical solutions which have helped individual carers to plan for the future.

This project emerged at a time when the political and policy priority was on resettlement from long stay hospital and there was a real need to raise awareness of the need to also provide support for elderly carers.

Method(s) of Involvement

Challenges

 

One of the main challenges for elderly carers is also the time constraints placed upon them which mean they have limited time to attend meetings and participate in co-production. There was therefore a real need to facilitate small local ‘learning sets’ to support them in this regard.

Outcomes due to involvement

As a result of this project, future planning for older people caring for adult dependents with a learning disability is now a policy and commissioning priority. As a result, a number of outcomes have been achieved. The University of Ulster was commissioned to develop a training package for keyworkers and carers. The PCC supported carers, who have been recognised as having a lifelong wealth of experience, to assist in the development and delivery of this training. This training was offered to all keyworkers in 2014. A comprehensive portfolio of information has also been made available.

The PCC is currently working to have this information made available online. The Health and Social Care Board has also pledged additional training for keyworkers and social workers through the University of Ulster. The HSCB undertook a needs assessment and business case on carers looking after adult dependents aged 35 and over. This led to service changes and recurrent funding being made available of £1 million in 2015/16, rising to £2 million in 2016/17. This is recurring revenue funding to support older carers across Northern Ireland to plan for the future of their dependents. This marks a significant breakthrough at policy, commissioning and service delivery level, and is currently being rolled out to all five HSC Trusts.

Another positive outcome is the establishment of local reference groups to enable carers to work directly with the Northern Ireland Housing Executive to further this work. Most significantly, the project is making a major difference to family life, providing people with the necessary support to make plans for the future. While much progress has been made, it has required continuous engagement by the carers, supported by the PCC, to get this far with the various organisations and departments. It will be important that momentum continues on this initiative, despite a period of organisational change in HSC services.

Elderly carers felt a real sense of relief in that the project provided them with the opportunity to effectively have their voice heard and plan for the future of their loved ones. In at least one area a new housing partnership has been developed.

Feedback/quotes from service users/carers involved

“There are lots of pieces of the jigsaw, but the overall picture is hazy. Families need up to date information about what is available in their area.”

“I would like a place locally for my son, that way I could ease the transition process.”

Timeframe

2012-2016.

Further Information

For further information, contact:

Louise Skelly, Head of Operations, Patient and Client Council
Email: louise.skelly@hscni.net
Telephone number: 07703210419
Web: The People’s Voice Report