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 undoubtably impacted on carers in many and varied ways. 

The counoil has also made a significant change to how 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 amd os 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 result of our deliberate shift towards conversations

• 9.2% had a mental health problem or illness, (down from 10.3% in 2018). Nationally there was a growth in carers disclosing a mental health problem so Peterborough differs significantly from the national picture in this respect. 

• Satisfaction with services received by the cared for person improved overall.  Those who were either extremely, very satisfied or quite satisfied rose from 54.6% to 59.9%

• There was a marked decrease was in those that said they had not received any support at all, which was down from 25.7% to 14%  

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

• A higher percentage of respondents had been caring for the person they cared for 20 years or more. This is likely to reflect a move towards a larger cohort of working age adults being supported by Adult Social Care
  

• 23.2% or carers stated that they did not receive and support during the pandemic, this was much 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 engage in things they enjoyed outside of their caring role and being socially connected 

About the Carers

• Carers known to the council are predominantly female, however the 2021 survey showed a slightly higher percentage of male carers responding.
• The biggest groups of carers were aged 55-64 and 75-84 and these age bands were also the biggest across the country.
• The carers in the sample were predominantly White British.
• 63.8% of carers responding were retired and 21.3% were employed or self employed. 19.7% indicated that they were not in employment because of their caring responsibilities.  This was an increase from 2018 and might reflect the impact of COVID-19.
• The majority of carers (78.8%) lived with the person they care for and 19.9% had been carers for 20 years or more.
• Only 33.6% of carers declared themselves to have no health condition or disability. 

Comment from a carer

"I am self employed because I can manage a limited amount of work to balance caring duties - BUT - I can't work enough to support myself/family as I would of if I were able to work more. It's not an either/or, it's an enforced situation not a decision based on choice",

Comment from a carer:

"I have my own problems health wise. I am also visually impaired and find it difficult to cope at times. I also get very tired. I am not sure what help I can get - not just a matter of time out". 

Age of people cared for

The largest age groups cared for were aged 75-84, (31.3%) and 85 and over (25.2%). 

Reason for caring

The most common reason for the cared for person requiring support was due to a physical disability.  The main growth area was in those caring for someone with dementia.

This section includes indicators where the results for Peterborough 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 18.7% in 2018 to 26.8% in 2021. 

Also in Peterborough 59.9% 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 54.6%.

Comments from carers

"I am happy with the care/information provided by Peterborough Social Services and feel fortunate to live in the area". 

"SC has been extremely helpful over the last 14 years that I have been a carer for my disabled wife. More recently to provide a replacement carer during the time our regular private carer was in hospital …... Also providing me respite time to take my disabled wife out to her regular gym work and shopping 5 hours/week".

Access to information and advice

More carers said that they found it very or fairly easy to find information and advice, up from 36.4% in 2018 to 44.1% in 2021.  

In respect of how useful carers found the information, in 2021 54.4% of carers said that it was very or quite helpful.  This was an improvement on 48.4% in 2018.

Comments from carers

"Disability Peterborough have also been most helpful providing a grocery delivery service during the pandemic. Also helping me get Attendance Allowance. Also providing a clothes ironing service and advice on travel insurance companies who specialise in insurance for disabled patients".

"As a carer I feel I have been very much left on to 'get on with it'. There is no proactive contact to check on to see that everything is OK, especially during these past 12 months. Even after testing for COVID-19 there was no communication to ask if we needed support. I have managed to find sources of help and support for myself but anyone older, with no experience or access to the internet would struggle".

Carers who feel that they have been consulted

In 2018 35.2% of carers said that they were not aware of any discussions about the person they cared for.  This was much better for 2021 with only 26.3% stating this. 

The percentage of carers who said that they always or usually felt involved or consulted was 44.5% which was better than the 2018 result of 43.9%.

Comment from a carer

"Difficult to get people to understand how we had become close to breaking point. No one would accept we couldn't provide the level of care needed and just accepted my parents word they could manage. lack of appreciation for our concerns regarding their safety when we weren't available. When we needed emergency support it took 3 days".

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 Peterborough have worsened since the last survey in 2018.

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

The percentage of carers who said they were able to spend their time doing things they value or enjoy went down from 16.8% in 2018 to 10.3% 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%.

Comment from a carer

"Council made thing harder than usual and clubs were stopped. This meant that I was caring 24 hours for my wife. We bought in nursing staff to allow me to go shopping etc. and this gave me a break. it also allowed me to go to hospital/GP visits as my own health has declined during this time. We may have been able to choose another route other than a care home (permanently) if we could at the time of had regular respite care. However, we appreciate that these were unprecedented times". 

Having control over their daily life

The percentage of carers stating that they had as much control over their daily life as they wanted reduced from 21.5% in 2018 to 16.4% in 2021. 

Comment from a carer

"As for the support available for the person I care for, considering his age, options are very limited. He is too old for some activities and too young for others. There are no day centre/activities geared for the 'middle aged' group. This put additional pressure on me as a carer, working full time and responsible for managing the home, finances etc, as well as providing support and activities to retrieve the boredom and keep his mind and body active".  

Looking after themselves

In respect of getting enough sleep or eating well less carers stated that they felt they looked after themselves, reducing from 55.2% in 2018 to 39.4% in 2021.  

Personal safety

The percentage of carers with no worries about their personal safety decreased from 79.3% in 2018 to 77% 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 32.2% in 2018 to 21.3% in 2021. 

Comment from a carer

"My husband has been spinal cord injured for 30 years. His condition has deteriorated so that he receives NHS continuing Healthcare Funding. He receives a 4 hours per day Care Package, supplied by an excellent local agency. As he is not helped by Social Services I have almost no contact/support. COVID 19 has left me more isolated than ever as it has been very hard to meet with friends and impossible to get to church. Please get me on the register so someone knows I exist. Even quarterly contact would be helpful".

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 33.4% in 2018 to 28.3% in 2021.  

Comment from a carer

"I have to say that employing a private carer for 1 hour in the morning for 6 days and an ASC help in paying for our carer taking my wife out for 5 hours a week is very gratefully appreciated".

Caring for others

The percentage of carers stating they never had time to care for other people nearly doubled from 3.1% in 2018 to 5.7% in 2021.  

Financial situation

The percentage of carers reporting no financial difficulties caused by their caring role in the last 12 months decreased slightly from 59.8% in 2018 to 59.2% in 2021.  

The percentage of carers reporting a lot of financial difficulties caused by their caring role increased slightly from 7.8% in 2018 to 8.3% in 2021.  

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

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

Overall satisfaction with services received

Peterborough's result for extremely, very or quite satisfied was 59.9%. The national result was 47.5%.

Access to information and advice

Peterborough's result for very or fairly easy to find information and advice was 44.1%. The national result was 37.7%.

Helpfulness of information and advice

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

Carers feeling consulted with

Peterborough's result for always or usually feeling consulted was 44.3%. The national result was 41.5%.

Caring for others

Peterborough's result for having always or sometimes having enough time to care for others was 42.9%. The national result was 39%.

Financial difficulties

Peterborough's result for caring having caused the carer no financial difficulties was 59.2%. The national result was 57.2%

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

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

Peterborough's result for being able to do all or some of the things they enjoy was 81.5%. The national result was 81.6%.

Having control over their daily life

Peterborough's result for having as much control/some control was 77.4%. The national result was 84.2%.

Looking after themselves

39.4% of carers in Peterborough said they looked after themselves. The national result was 49.2%.

Personal safety

77% of carers in Peterborough said they had no worries about their personal safety. The national result was 80.5%.

Social contact

Peterborough's result for having as much social contact as they want was 21.3%. The national result was 28%.

Encouragement and support in their caring role

Peterborough's result for having as much encouragement and support as they want was 28.3%. The national result was 31.5%.

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 

45.8% 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, only 23.2% said that they received no support at all, compared to the national result of 45.5%.

Social contact during the pandemic

Only 11.5% of carers felt they had as much social contact with people as they wanted during the pandemic.  This was lower than the 17.8% national result.

Personal safety during the pandemic

66.5% 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

49.4% 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 42.2% 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

"During the last 2 years because of the COVID I have not had any break from my caring role or any respite break at all, as I was very worried about my daughter catching COVID so I rang social services to see if I can have my elder daughter, if she could have her for the weekend so I can have a break, but the person I spoke to said she took my details and somebody will contact me. But nobody rang me back". 

"As my son was classed as extremely vulnerable, I cancelled all respite care to ensure his safety. My mental state suffered severely as my only release was a 45-minute walk with him daily. I was supported by my youngest son who was home from university. It was agreed he could supply a sleep night for me once a week. My son struggles with changes in routine and was very frustrated by our lack of contact with the outside world. I was also supported by friends who did my shopping and prescription pickups. I was frustrated that I was not vaccinated at the same time as my son, as the consequences of me being ill would have been catastrophic and this in turn affected my mental health".

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 201

ASCOF Carer Experience Indicator	2016	2018	2022	Change	2022 Region
Carers Quality of Life (high is good)	7.8	7.4	6.8		7.3
Carers with as much social contact as they would like	33.2%	32.2%	21.3%		28.8%
Overall satisfaction of carers with social services	38.1%	39.8%	40.7%		35.4%
Proportion of carers who report that they have been included or consulted	71.2%	67.7%	60%		65.4%
Carers who find it easy to find information about services	N/A	63.6%	56.3%		55.6%

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?

37.7% of carers said it was quite or very difficult.

If you found it difficult to get the support or services you needed as a carer in the last 12 months, please tell us why and what we can do to make it easier for you) 

"My comment is not about me, but about all of those carers who are 'dropped in the deep end' when their loved one is suddenly discharged from hospital and sent home to be looked after by a member of the family acting as a part time or permanent carer. From my experience your lifestyle changes completely - you are 'in the dark' as to what help you can access and you don't know what questions to ask. You are given certain information before the patient leaves hospital, but the information is not 'taken in' because your attention is focused on your loved one. The same can be said about the City Council who visits you at home. You are bombarded with help and information, but at a vulnerable time, so only 10%of the information is retained. There needs to be someone who regularly visits the home and talks to the carer about problems and benefits available. The visits could diminish in time as the carer becomes more knowledgeable".

"The hardest part was that before support became easy to obtain, my Dad had to reach a crisis point and not be safe in his home anymore. More support to plan earlier would have been helpful".  

"There are no day care facilities available at a weekend that we can access for my husband and help to give me a rest. I cannot be the only carer working full time who would find a facility like this invaluable".

How is your health in general? 

33.2% said their health was very good or good. 49.4% responded that it was fair and 17.6% said bad or very bad.  

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

51% of carers found information from the internet and 42% 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.  We also recognise the impact of COVID-19, and 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 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 Carer’s Strategic Group with representation from teams across Peterborough City Council and Cambridgeshire County Council as well as Cambridgeshire and Peterborough 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 Peterborough 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 Nice Guidance for supporting adult carers.