Survey of Adult Carers 2021

The carer’s survey results provide important insights into the lived experience of people who provide unpaid care for others.

During the period between the current and previous surveys we have experienced the pandemic. This has undoubtedly impacted on carers in many and varied ways.

The council has also made a significant change to how we engage with carers, by moving away from a 'one size fits all' model of undertaking carers assessments and reviews. Often a lengthy assessment is not what carers want. We now encourage conversations with carers which could result in linking a carer in to support networks in their local community, or providing information and advice.

Some carers do go on to receive a full assessment, but this number is much reduced and so more likely to occur when someone is caring for a working age adult. While we believe this is a better way of interacting with carers, it has impacted on the group contacted for their responses to this survey, with a large shift in the sample away from people who are caring for older people and towards people caring for working age adults.

Some key findings from the detailed of the survey set out in this report are listed below:

• Fewer carers had received formal assessments as a result of our deliberate shift towards carer conversations. This meant that 86.5% had not had a formal assessment or review in the year compared to 42.4% in 2018.

• There was a marked decrease in those that said they had not received any support at all, which was down from 28% in 2018 to 10.8% in 2021.

• An increase in carers who stated they had a mental health problem or illness, from 9.3% in 2018 to 17.9% in 2021. Nationally there was an increase in carers disclosing a mental health problem should be from 16.3% to 19.8% so Cambridgeshire was in line with the national picture in this respect.

• A decreased number of respondents were retired, 54.3% in 2021 compared to 61.7% in 2018, and much lower than the 81.9% responding nationally.

• The number of respondents who had been in their caring role for over 20 years increased, from 23.8% to 47.7% in 2021. Nationally the percentage caring for over 20 years, although still the largest group of respondents, was only 24.5%. This is likely to reflect a move towards a larger cohort of working age adults being supported by Adult Social Care.

• Although there was a decrease from the 2018 survey, a large percentage of carers are supporting someone for over 100 hours a week, 34.9% in 2021 compared to 41.8% in 2018, and lower than the 36.4% nationally.

• Satisfaction with services received by the cared for person improved overall. Those who were either extremely, very satisfied or quite satisfied rose from 51.4% to 60.2%.

• Health impacts of being in a caring role had worsened in nearly all areas, particularly in the areas of feeling depressed, general feeling of stress and making an existing condition worse.

• 32.5% or carers stated that they did not receive any support from Adult Social Care during the Covid-19 pandemic, lower than the 45.5% nationally.

• There was a significant decrease in how carers reported their sense of having control over how they spent their time, being able to spend time doing things they enjoyed outside of their caring role and being socially connected.

About the carers

• Carers known to the council are predominantly female, with the 2021 survey showing a slight increase in the percentage of female carers responding (74.7% increased from 69.9% in 2018).
• The biggest groups of carers were aged 55-64 and 65-74.
• The carers in the sample were predominantly White British.
• 54.3% of carers responding were retired and 21.9% were employed or self-employed. 26.3% indicated that they were not in employment because of their caring responsibilities. This was an increase from 18.8% in 2018 and might reflect the impact of the Covid-19 pandemic. 
• The majority of carers (77.3%) lived with the person they care for and 47.7% had been carers for 20 years or more.
• Only 33.8% of carers declared themselves to have no health condition or disability.

Comments from carers

“I do not want to be a carer I was forced into this role, I have been on antidepressants for 7 years and sleep deprived for 5 years.”

“My home has been fully adapted to accommodate the needs of the person I care for. As long as we continue to receive direct payments for the regular respite we receive, I am able to cope reasonably well in the home. It is very tiring and sometimes breaks are needed more regularly but at the moment I am pleased with the support we receive.”

Age of people cared for

Cambridgeshire County Council saw a significant swing from older people to younger adults, 38.9% aged 18-44 (18.1% in 2018).

Reason for caring

The most common reason for the cared for person requiring support was due to a physical disability (an increase from 48% in 2018 to 53.1% in 2021). The biggest increase was for those with a learning disability or difficulty rising from 19.4% in 2018 to 45.7% in 2021.

This section includes indicators where the results for Cambridgeshire have improved since the last survey in 2018.

Overall satisfaction with the support services received by themselves and the cared for person

The percentage of carers who reported that they were 'very satisfied' with the services received increased from 9.1% in 2018 to 12% in 2021.

Also in Cambridgeshire 60.2% of carers said they were extremely, very or quite satisfied with the support service received which is an improvement from 2018 where the result was 51.4%.

Comment from a carer

“Since moving to Cambridgeshire in 2007 we have been pleasantly surprised and grateful to receive the level of care and support that we and my daughter now receives. We previously lived in ******* and we thought we were the only people to have a child with disabilities. I seem to have spent my time coming up against brick walls and casting around for support that was virtually non-existent. I felt completely alone and depressed about her and our situation. That has now changed since moving here to Huntingdon.”

Financial situation

The percentage of carers reporting no financial difficulties caused by their caring role in the last 12 months rose slightly from 57.1% in 2018 to 58.3% in 2021. Those responding that they had faced a financial impact to some extent had also decreased slightly from 34.1% to 33.7%. Those reporting a lot of financial difficulties had also reduced from 8.7% in 2018 to 7.9% in 2021.

Comment from a carer

“The thing that I find most draining is having to fill in endless D.H.S.S. forms - information that I have given year after year and feels like adding 'insult or injury' is a huge mountain to climb.”

Access to information and advice

A higher percentage of carers had sought information and advice in 2021 (69%) than in 2018 (59.6%). Also, an increased percentage stated that they found it very easy to find information and advice, up from 8.1% in 2018 to 10.9% in 2021.

Comments from a carer

“My son was transferred from the young adults team to the adult and autism team. I was apprehensive about this as I thought that support for him and his family would be pulled back. My fears were completely unfounded the team have been great! In particular ******* has been brilliant and information, advice and support has been even better.”

Carers who feel that they have been consulted

The proportion of carers who had not been aware of any discussions in the last 12 months had decreased from 36.1% in 2018 to 21.7% in 2021. Also, the proportion of carers who said they were always involved or consulted had increased from 25.5% in 2018 to 33.2% in 2021 and the percentage who stated that they were usually involved rose from 23% in 2018 to 23.7% in 2021.

Comment from a carer

“Really impressed by the commitment ***** has shown to improving *****'s life outcomes. Caring for a person with additional needs can often be a lonely occupation, knowing that there is someone committed, reliable and consistent out there has meant a great deal to our whole family.”

Caring for others

The percentage of carers stating that they cared for someone else and always or sometimes had time to care for them increased from 26.4% in 2018 to 42.9% in 2021.

This section includes indicators where the results for Cambridgeshire have worsened since the last survey in 2018.

Being able to spend time doing the things they value or enjoy

The percentage who said they were able to spend their time as they want, doing things they value or enjoy went down from 18.5% in 2018 to 15.2% in 2021. However, the percentage who said that they were able to spend some time doing things they enjoy (but not enough) was 71.2% which was better than the 2018 result of 68.9%.

Comments from carers

“I only get 'free' time if I go out. That is not always easy or possible. There are sometimes events etc I would like to go to but they are not within the hours of care! Often have to be 'Cinderella' to be home all of the time.”

“'Carer staff is a struggle at the moment. Putting a strain on our family. Not able to go away due to lack of sleep-in staff from the agency we have used for years.”

Having control over their daily life

The percentage of carers having as much control over their daily life as they wanted reduced from 23.2% in 2018 to 19.4% in 2021, with those stating they had some control increasing marginally from 63.4% to 63.6% and those feeling they had no control rising from 13.4% to 17%.

Comment from a carer

“Although we have carers approximately 25 hours a week and some extras, unless I physically go out I am still 'on call' to help with my husband’s needs – not the carers fault just the fact that I am either in the house or garden my husband because of dementia mainly wants me to help him or be with him, through frustration or fear.”

Looking after themselves

In respect of getting enough sleep or eating well, there was a decrease in carers who stated that they felt they looked after themselves, reducing from 54% in 2018 to 46.8% in 2021. Also, there was an increase in the percentage of carers saying they only sometimes looked after themselves well enough, from 29.2% in 2018 to 33.2% in 2021 and those that stated they were neglecting themselves increased from 16.7% in 2018 to 20% in 2021.

Comment from a carer

“Even small plans like washing my hair, cleaning, reading etc have to be abandoned!! I have an existence not a life!”

Personal safety

The percentage of carers with no worries about their personal safety decreased from 84.3% in 2018 to 79.4% in 2021. A larger percentage than previously had some worries about their personal safety, increasing from 14.9% in 2018 to 18.2% in 2021 and a small, but also increasing, percentage were extremely worried about their personal safety rising from 0.8% in 2018 to 2.4% in 2021.

Social contact

A smaller percentage of carers felt they had as much social contact as they wanted with people they liked down from 35.1% in 2018 to 27.6% in 2021.

Encouragement and support in their caring role

There was a reduction in the percentage of carers stating they had encouragement and support in their role as carer down from 34.4% in 2018 to 31.6% in 2021.

Comment from a carer

“The lack of joined up resources. After my dad died someone was round to take away a lot of the money that my parents received as Dad was mum’s full time carer. Yet it took 9 months to do a reassessment of her needs. There was no road map to all services that are available, documents and reports are long and complicated. There is no privacy to explain the needs of the cared for without them present. They need to keep their dignity and not be told they are unable to look after themselves. I am really disappointed in the service provided for carers and the cared for. This had added stress and anxiety to both my mum and me.”

Caring for others

Carers responding to the 2021 survey were more likely to also be having caring responsibilities for someone else, with those stating that didn’t have caring responsibilities for anyone else decreasing from 56.1% in 2018 to 48.8% in 2021. The percentage stating that they cared for someone else and always had time to care for them decreased from 17.8% in 2018 to 16.4% in 2021. Those stating they never had time to care for other people almost doubled from 5.7% in 2018 to 10% in 2021.

Access to information and advice

A higher percentage of carers found it fairly difficult to find information and advice, up from 15.4% in 2018 to 22.6% in 2021. Also, there was a slight increase in the percentage who found it very difficult to find information and advice, up from 7.7% in 2018 to 8.1% in 2021.

Comment from a carer

“For the present generation of elderly the often either inability to speak to someone on the phone without endless button pressing, music playing or unclear voices and lines is a source of frustration. We have been brought up with the ability to speak face to face with people and telephones either being answered or engaged and despite the fact that many of us use computers regularly for emails etc. we do not trust ourselves to use them for more important things. The physical side of caring for someone is often less stressful than the paperwork/decision making etc.”

Helpfulness of information and advice

The percentage of carers stating that information and advice had been very helpful dropped slightly from 16.9% in 2018 to 16.7% in 2021. Also, those who found it quite unhelpful doubled from 5.2% to 10.4%, and those who found it very unhelpful also rose from 1.9% to 3.6%.

Comment from a carer

“As an unpaid carer (sister) it is difficult to find the necessary support/advice as I am not familiar with the routes required to access the support services. It would be made much easier if carers were able to contact one professional co-ordinator who would work with the carer to understand and attain the help required and for the same co-ordinator to be available to give advice as circumstances change. It is not sufficient for professionals (e.g. GPs and others) to say 'try this number' and various other numbers which turn out to be quite irrelevant, frustrating and a waste of time.”

This section compares Cambridgeshire's results with the national average results.

Indicators where Cambridgeshire's results were better than the national average

Overall satisfaction with services received

Cambridgeshire's result for extremely, very or quite satisfied was 60.2%. The national result was 47.5%.

Access to information and advice

Cambridgeshire's result for very or fairly easy to find information and advice was 38.3%. The national result was 37.7%.

Helpfulness of information and advice

Cambridgeshire's result for very or quite helpful was 54.4%. The national result was 53.2%.

Carers feeling consulted with

Cambridgeshire's result for always or usually feeling consulted was 56.9%. The national result was 41.5%.

Caring for others

Cambridgeshire's result for having always or sometimes having enough time to care for others was 41.2%. The national result was 39%.

Financial difficulties

Cambridgeshire's result for caring having caused the carer no financial difficulties was 58.3%. The national result was 57.2%

Being able to spend time doing the things they value or enjoy

Cambridgeshire's result for being able to do all or some of the things they enjoy was 87.6%. The national result was 81.6%.

Indicators where Cambridgeshire's results were worse than the national average

Having control over their daily life

Cambridgeshire's result for having as much control/some control was 83%. The national result was 84.2%.

Looking after themselves

46.8% of carers in Cambridgeshire said they looked after themselves. The national result was 49.2%.

Personal safety

79.4% of carers in Cambridgeshire said they had no worries about their personal safety. The national result was 80.5%.

The national survey in 2021 also asked four questions specific to the Covid-19 pandemic.

Satisfaction with the support received from social services during the pandemic

42.6% of carers stated that they were extremely, very or quite satisfied with the support they received. This is much better than the national result of 33.7%. In addition, 32.5% said that they received no support at all, compared to the national result of 45.5%.

Social contact during the pandemic

18.6% of carers felt they had as much social contact with people as they wanted during the pandemic. This was higher than the 17.8% national result.

Personal safety during the pandemic

69% of carers stated that they had no worries about their personal safety during the pandemic. This was lower than the 71.5% national result.

Feeling consulted and involved during the pandemic

53.2% of carers said that they always, usually or sometimes felt involved and consulted. This was better than the national result of 41.2%. Additionally, only 40.5% said that there had been no discussions that they were aware of. This is much better than the national result of 51.5%.

Comments from carers

"Normally the care we received from social services is very satisfactory, but during the pandemic things obviously changed. I don't blame the services, but it was a very hard time for those of us caring full time. It certainly made me appreciate all the help we normally have."

"Although I am always able to contact my son’s social worker via phone or email, both my son and I have been disappointed behaving to carry out reviews by technology. It is very difficult to concentrate and take part in valid discussions when the internet keeps cutting out, and the sound quality is poor. It doesn't allow for interactive discussion."

The national survey of adult carers provides valuable local insight into carers and their experiences, but it also feeds a number of national indicators within the Adult Social Care Outcomes Framework (ASCOF).

The results show that all ASCOF indicators have worsened since the last survey in 2018.

In addition to the prescribed national questions Local Authorities are able to choose additional questions from a list of approved questions, where they think these may add value. In collaboration with members of the Carer’s Partnership Board the following local questions were selected.

Have you found it easy or difficult to get the support or services you need as a carer in the last 12 months? The services may be provided by different organisations, such as a voluntary organisation, a private agency or Social Services.

38.8% of carers said it was quite or very difficult.

Comments from carers

“I would quite like a telephone call say every three months as a courtesy call to enquire how I am doing.”

“Other than Making Space (lovely and supportive) there does not appear to be anything available for carers of people with severe mental illness. This is compounded by huge cuts to adult mental health services over the last 10-15 years by this NHS Trust, resulting in the closure of the Day Centre and club House for those with severe mental illness, cutting regular 'at home' visits by community mental health completely. This puts all the onus of care on carers. There are also no respite services. Carers such as myself have to sacrifice employment opportunities, study opportunities, social life, health outcomes and the possibilities of relationships and having families of our own. Subsidised (long-term) physical wellbeing/exercise services that are flexible (not just off peak) available to all carers (including these in employment) would be helpful.”

How is your health in general?

44% said their health was very good or good. 53.4% responded that it was fair and 2.7% said bad or very bad. 

What do you use to find information and advice about support, services or benefits?

56.9% of carers found information from the internet and 33% of carers found out information from family and friends.

We recognise the valuable role played by carers and the impact that their role has on their own health and wellbeing, as well as the wellbeing of those they care for. Also we recognise the impact of the Covid-19 pandemic and how the changes made in relation to health and social care during the pandemic has further impacted carers wellbeing.

We are now working to address both the short-term operational response as well as the longer-term strategy for carers and are doing so in a co-produced way with carers support groups and carers themselves.

Carers Strategic Group

We have a Carers Strategic Group with representation from teams across Cambridgeshire County Council and Peterborough City Council as well as Cambridgeshire and Peterborough NHS Foundation Trust (CPFT), chaired by the Assistant Director for Safeguarding, Quality and Practice. The group maintains oversight of all activity relating to carers. Current areas of focus for the Strategic Group are:

1. What are carers telling us about whether the way we are supporting them is what they need, and what are we proposing to do differently as a result?
2. How confident can we be that the shift from formal assessments to conversations has resulted in better outcomes for carers?
3. How can we most effectively measure all of the activity we undertake with carers both internally and by externally contracted providers to reassure ourselves that it is having the impact carers tell us they want?

Audit of Carers Assessments

We have undertaken a thematic audit of carers assessment and support planning. The audit included a random sample of 129 cases across Peterborough and Cambridgeshire. In summary, the audit concluded that we are good at:

• Having clear management oversight of activity relating to carers
• Establishing and recording the extent of the caring role
• Good recording of information within carers assessments and support plan

There was evidence to show that we need to improve in the following areas:

• Providing information about how to give feedback and/or make a complaint
• Ensuring the support plan includes contingency planning in the event of an emergency or deterioration and fluctuations in the carer’s ability to continue in their caring role
• Undertaking supported self-assessment in a meaningful way (i.e. supporting the carer through this)

We have used these results to drive forward improvements in our practice. This includes practitioners coming together to discuss challenges they are experiencing with supporting carers and share examples of best practice.

Hearing the voice of carers

We do not want to rely on the national carers survey to hear the voice of carers in Cambridgeshire and are now working in several ways to respond to the lived experience of carers. The Principal Social Worker and colleagues are taking forward work to improve how carers can provide us with feedback after each interaction with them, beyond compliments and complaints, so that we can continuously learn from their experience of our support offer. This being done in co-production with people with lived experience.

Carers Strategy and implementing NICE guidance

In 2022 a Carers Experts by Experience Panel was brought together to inform and guide the development of a systemwide Carers Strategy.

We are working with the Carers Partnership Board and the Carers Experts by Experience Panel to implement the National Institute for Health and Care Excellence (NICE) Guidance for supporting adult carers.