Carers Action Plan 2018-20: Supporting Carers Today

Baroness Gale Excerpts

Thursday 21st June 2018 Lords Chamber

[Baroness Gale (Lab)]

My Lords, I thank the noble Baroness, Lady Redfern, for bringing this important debate before us. I will speak about carers who take care of people with Parkinson’s. I declare an interest as I co-chair the APPG on Parkinson’s. What I will say about those who care for people with Parkinson’s will apply to carers who look after people with any progressive condition.

Support provided by carers is essential to the well-being of people with Parkinson’s. There are challenges for carers of people with Parkinson’s. They tend to be female, older and co-resident, with a long history of caring. The challenges of caring for someone with a progressive condition are profound. I know this because my father had Parkinson’s and my mother looked after him for about 20 years. She would never have called herself a carer in those days. The term just was not used. She looked after him because she was his wife and she took great care of him. I am so glad that things have improved from those times.

One of the main reasons why people with Parkinson’s are admitted to care homes for definite and indefinite periods is carer breakdown. Evidence from Parkinson’s UK has shown that people with Parkinson’s, their families and carers are not aware of the support available and often access it only at crisis points. The carers’ strain report, published in January, found that almost 70% of people who care for someone with Parkinson’s were in need of some form of respite care, while 30% were at risk of “burning out”. The report also found that age, the stage of a person’s condition, their mental health scores, swallowing problems, daytime sleepiness and delusions were all significantly associated with greater demands on carers.

Effective and timely treatment for people with Parkinson’s, including addressing mental health needs, can go a long way towards reducing strain on carers. The issue of supporting carers is therefore complex and relates to a wide number of areas. Information about rights to assessment as a carer, and to reassessment when circumstances change, is particularly important. Information also needs to be targeted at seldom-heard groups, including carers in rural areas and those from ethnic minority communities. People need to be supported to access this information.

The Caring about Parkinson’s survey in July 2016 looked at how social care is working for people with Parkinson’s and their carers. It revealed that,

“76% of carers who answered the question ‘have you ever been offered an assessment of your own needs?’ had never received an assessment … 74% of respondents with Parkinson’s and 59% of carers were unaware of their local authority’s social care information service and many people with Parkinson’s and carers did not know how to request a social care assessment”.

No carer in the survey reported receiving access to preventative support, despite Care Act guidance which emphasises the value of such support for carers.

The Putting People with Parkinson’s in Control study, published in February 2016, also found a consistent message that people with Parkinson’s did not know what social care was available to them or how to access it. Getting access to social care at the right time can help reduce the number of crisis events, such as a hospital admission, or avoid them altogether. It can even slow down the need for residential or high-cost care and reduces responsibility on the carer. The Carers Action Plan also describes a desire to improve support for carers’ mental health. This area is often neglected, but will impact on the quality of care provided.

The All-Party Parliamentary Group on Parkinson’s conducted an inquiry, which I chaired, on improving mental health services for people with Parkinson’s. The report was published in May. It is a totally neglected area; this type of report has never been undertaken before. We found that addressing the mental health needs of people with Parkinson’s can reduce the strain on carers. At the same time, supporting better mental health for carers will impact positively on the care and support they can provide for people with Parkinson’s.

The APPG report also lists many factors which prevent mental health needs being addressed effectively. These include delays in assessments, a shortage of specialist mental health professionals, poor communication between services and an artificial divide between physical and mental health services. This divide is a big problem; if only it could be matched up, we would really improve services to people.

The Carers Action Plan notes:

“The Department for Work and Pensions will ensure that benefits for carers (including Carer’s Allowance and Universal Credit) meet the needs of carers and support employment for those carers who are able to work”.


This lacks detail, and there is no specified deadline for when this work will take place. Will the Minister be consulting stakeholders about any amendments to benefits to ensure that they meet specific needs?

Reform of carer’s allowance is a priority, as carers need a fair income and support if they wish to work or remain in work. A solution would be to raise the earnings limit for carer’s allowance, as the limit prevents many carers returning to work. Another would be to address the overlapping benefit rule that prevents those in receipt of a pension receiving the allowance. There should also be better information and advice about the benefits available.

The Carers Action Plan recognises the importance of working with charities and third sector organisations to create more “carer friendly communities”. Parkinson’s UK has an extensive support network. It has more than 440 local groups across the UK that support people with Parkinson’s, their families and carers. These groups are run by volunteers who often have experience of Parkinson’s. Local groups fundraise to support activities and provide such things as exercise, singing classes and respite for carers. It is a valuable resource and I know many charities carry out similar work.

There is a need for better data gathering to improve services. Parkinson’s UK has sometimes found this a barrier when conducting its own research. For example, when undertaking the Caring about Parkinson’s research, 63% of local authorities that responded to Freedom of Information requests were unable to provide any of the requested information. In most cases, this was because the local authority did not collect data by condition. If we have not got the data, we do not know what the problems are, so those problems cannot be solved.

Key improvements are needed: I suggest the following. We should ensure that social care is easy to access and information about it is prominently available on council websites. We should regularly offer people with Parkinson’s, and their carers, assessments of their needs. We should improve mental health services for people with Parkinson’s, and their carers, with attention to the condition-specific needs of Parkinson’s disease. We should reform carer’s allowance and improve the gathering of condition-specific data. Will the Minister look at these key improvements and read the report from the APPG, which is about people with Parkinson’s who experience anxiety and depression? If she looks at the recommendations, I am sure she will agree that there is much that should and can be done, and I look forward to her response.