Unpaid Carers Project: Experiences of Loneliness and Social Isolation

Healthwatch Bolton collected data about unpaid/informal carers via a survey. There were 30 respondents to the survey, though not every question was answered by all respondents.

• The carers in this study were most likely to be a parent, spouse, or child of the person they care for.
• People described a range of frustrations with being a carer. Many of these emotions were related to the challenges of the day to day role and often linked to a lack of time for themselves, support to do things like work, or take a break.
• There were also some with a sense that services are not always easy to communicate with. For example, there is an expectation that services would call back and arrange support if offered, but this did not always take place. In addition, understanding a system which is often split across local Council and NHS could leave people feeling isolated; it takes time to understand how this all works.
• Those we heard from are dedicated to those they care for. There was therefore concern about the future, mainly that carers would be able to continue working and therefore have enough money to get by. The other concern related to the person they cared for, what would happen to them once the carer was too old to continue providing support. A few carers expressed that they felt caring had taken over their lives.
• Carers did not always feel valued and this may in part be due to the at times unregistered nature of their role. This might also be compounded by 4 difficulties in accessing self-care or formal medical services due to time constraints.
• Respite is an issue that has been explored by Healthwatch before and it once again played a part in people’s experiences in this project. Essentially, respite was not always felt to be easy to access. Naturally, it can mean different things, not just a formal site where people can be left for a time, but also another person helping at home.
• There is a range of activities carers like or would like to do. Many of them are ordinary daily activities such as walking outside, meeting family, listening to music, or other hobbies.
• Use of technology was mainly related to information gathering

Recommendations:

• Regarding carer support, if there was easier more appropriate respite this might go some way to fulfilling the need for some time away from caring
• Services should also continue to make their routes for referral and access easier to understand for carers. As much flexibility as possible would be supportive.
• GPs have already been encouraging patients to register as a carer and this should continue.
• Local groups offer a support system for those that access them. They should be supported to continue their work where possible.
• Technology was mainly used for the gathering information or advice. There might be ways that technology could be further explored to assist carers.