Stella and Syeda Meet the Carers!

Stella and Syeda, Service User Involvement

Stella and Syeda are involved in a QI project to improve and increase Service User and Carer Involvement in Tower Hamlets QI projects

“With all the excellent QI work going on to improve services for patients/service users, we mustn’t forget a very important and hardworking group of people – the carers. Carers are often an integral part of service users’ lives and perform a huge amount of unpaid care work; although their efforts can often go unappreciated and unrecognised. Any successful service improvement should surely involve them.

As part of the work on improving and increasing service user and carer involvement in QI projects; we recently visited two carer groups in Tower Hamlets: Rethink Carers Support Group and Carers Centre Carers/Mental Health Combined Forum, separately. Both meetings involved some lively discussions and exchange of useful information. The two groups of carers raised many challenges and a variety of issues that they face, some relevant to ELFT and some to other services. These carers feel under tremendous pressure in their caring role. There were many common themes and we have summarised the major issues raised below.

• Carers’ status and identification – Carers can find themselves repeatedly explaining who they are and their relationship with the person(s) they cared for. Many carers suggested developing an identification system such as ID badges to solve this issue.
• Cuts to services – many carers are feeling the strain from service reduction, for example access to respite services for carers has been reduced. Carers would like to be provided with more information on alternative resources that provide the support they need, such as local charities. A suggested improvement to services was coordinating appointments to happen on the same day. This would reduce travel costs and time for carers
• Carers’ advocacy and information – Carers would appreciate more constructive support in helping them to have a voice in how services are run and where and how to get the most support out of services and welfare. It was suggested that specific information to be made available through a consistent, dedicated point of contact rather than carers trying to sift through a large database of information. This method would also allow more frequent opportunities for specific Q&A with service providers and healthcare professionals and therefore a greater understanding of treatments and care available to service users.
• Coordination – Carers often find themselves dealing with a range of professionals who are involved in the care of the service users. This can be confusing and time consuming. Carers suggested a centralised, coordinated approach, such as integrating with the service users’ Care Programme Approach. More continuity of care is also needed; carers appreciate being able to see the same healthcare professional for appointments.
• Confidentiality – Carers expressed concern that sometimes confidentiality is not clearly explained to them E.g. what carers can and cannot know about the service user’s care/treatment. Some carers have felt that confidentially was purely arbitrary and disclosed and undisclosed information was not consistent based on the service user.
• Physical illnesses – Carers felt that staff were not always very empathetic about physical problems. It was suggested that a closer link between physical and mental health was crucial to an improvement in care and change in this area should be pursued.

We really enjoyed meeting these carer groups. As this meeting showed there are many areas within services and carer support structures to improve. Some of the issues highlighted would be ideal for QI projects. Addressing these issues would make a huge difference to the experiences and lives of carers and their cared for.”

Would your team consider tackling one of the above issues?