The results of our survey of unpaid carers revealed many issues faced by those across Hampshire who are caring for people at home. Here is our full report.
We launched our survey of those caring for family or loved ones at home, during the pandemic, to find out what kind of issues they had been facing. Through our online survey, email, zoom calls and paper questionnaires, we received feedback from almost 200 unpaid carers of all ages from across the County.
Our full report can be downloaded here:
There were three strong themes that emerged from the stories the carers told to us within the survey:
Carers Rights
It was clear from the responses that many carers were not aware of their legal rights or the kind of help and support that might be available to them. It was particularly clear that carers were not aware of their right to a Carer’s Assessment.
The Care Act 2014 states that anyone who helps another adult (usually a relative or friend) in their day-to-day life has the right to a carer’s assessment, regardless of the amount or type of care they provide or their financial circumstances.
These assessments give people the opportunity to reflect on their needs and identify what community services and charities can support them.
We asked how many carers had been able to get a Carers Assessment during the pandemic and the results showed:
45% said they have not registered with their GP as a carer
11% of people had been able to get an assessment
38% had not been able to get an assessment
51% did not know what carers assessments were
90% of those who responded to this question had been carers for more than a year
As a result of these responses, we developed our Support and Information for Carers page which includes information about registering with the GP, Carers rights and Carer’s Assessments.
Concerns for health of the person they are caring for
A second key theme which came through in the responses was the negative effect the lockdown or being isolated was having on the person they were caring for. Carers shared stories about the lack of respite and contact with others, leading to health deterioration, and loneliness.
"Life has been very difficult during the pandemic as all the groups my husband was attending were closed. He has Alzheimer's and he has definitely deteriorated during this year and consequently I have found it very stressful trying to manage him by myself. He has times when he is extremely confused and/or agitated and this has taken its toll on my mental health… I have been at my wits end knowing what or whom to turn to".
Our survey revealed that 70% of carers had not been able to access a break during the pandemic and were unable to leave their charges at home alone safely, even to go shopping or to pick up a prescription. Many struggled to access online services to help with this.
41% said they could not access charities or local voluntary groups for help and support
They also voiced the difficulties faced in trying to explain the pandemic and lockdown to vulnerable people who didn’t understand why they couldn’t leave the house or see people they loved.
"The person I look after has learning disabilities and could not understand why everyone who helps out was not coming to see them, they felt very lonely and isolated this then led to severe distress".
3. Concerns for carers themselves
The final theme was the lack of support and respect which carers felt for themselves. In their responses many carers used the word “abandoned” or “left to it” when describing caring during Covid-19.
73% of carers said being a carer had affected their mental health
71% saw an increase in the number of hours they spent caring
37% saw a negative impact on their finances
25% saw a negative impact on their employment
60% saw a negative impact on their physical health
“I had no respite by being able to take mum to her usual older persons activity groups. Her Alzheimer's disease worsened considerably during lockdown with increasing challenging behaviour. I felt trapped with nowhere to turn to for a break. As a disabled 67 year old, not in the best of health myself, I felt dragged down even more.”
“Really, really hard work physically. Mentally draining. Our son can do a lot of things for himself, but he needs a lot of support, encouragement, motivation and a positive environment. Usually we can share being upbeat with school staff and wider friends and family.”
There were some positive responses with many saying friends, family and other services had been helpful to them, providing much needed support, and online systems such as zoom calls with other carers had given relief and somewhere to share concerns.
42% said their GP was helpful when it came to getting help and support
69% said friends and family were helpful when it came to getting help and support
What needs to change for unpaid carers going forward?
Following the survey results we are recommending a number of areas of work to be taken forward to help unpaid carers across the county, which can be summarised as follows.
Ensure carers have quick, easy access to the information they need
Ensure carers can easily access the information they need regarding accessing Carers Assessments
Establish which local community schemes have worked well, with a view to sharing good practice and encouraging the creation of new, sustainable schemes across Hampshire
Raise awareness within the NHS of the role, responsibilities and priorities of carers
Raise awareness of carers feedback that there has been no financial recognition that hours spent caring have dramatically increased during the pandemic
What we are doing now
As Healthwatch Hampshire, our role is to make sure unpaid carers have their voice heard so we will be sharing our report and their stories as widely as possible across the county, to bring attention to the issues raised by the carers. We are:
Sharing the report with more than 150 key stakeholders across the county in health and social care
Making the report publicly available on our website
Sharing the messages on social media channels, including a video with carers
Doing interviews in the media to make sure carers voices are heard
Supporting other regional Healthwatch to run the same survey in their areas
Immediate next steps for Healthwatch Hampshire
Following on from this piece of work, we want to continue working with unpaid carers across the county to make sure they are being heard and listened to. We have a number of projects following on from our survey:
Updating our support for carers information and advice website page by continuing to add to the resources listed
Partnering up with the Hampshire Carers Partnership Board to work on a project around carers getting the access they need to GP surgeries, and identifying good practice.