The Social Services &

Health and Social Care Committee - Inquiry into loneliness and isolation

Carers Wales is part of carers UK. We welcome the Committee’s inquiry into loneliness and isolation. Isolation and loneliness has an impact on caring and relationships and affect carers of all ages.

Carers are not a homogenous group and will have different needs depending on their caring situation. Carers Wales is restricting this evidence to how isolation and loneliness affects carers of all ages and their caring relationships and much of the issues raised and the evidence will be equally relevant for older people who are caring as well as younger carers.

In Wales according to the last census in 2011 there were 369,186 carers. Of these carers 87,173 were aged 65+ and 131,120 aged between 50-64.

More needs to be done for all carers of all ages to improve carers’ well-being and alleviate the loneliness and isolation that they encounter. The Welsh Government Well-being statement for people who need care and support and carers who need support contain national well-being outcomes and the personal outcomes that individuals may wish to achieve. These outcomes are not age specific and more could be done to ensure that specific monitoring information is requested about the well-being of older carers through the national outcomes framework. However we would wish to see this evidence gathered for carers of all ages to see what is being done to alleviate loneliness and isolation for all carers.

Welsh Government’s Declaration of Rights for Older People clearly spells out the rights of older people In Wales that includes rights that may help older people prevent becoming lonely or isolated. The declaration should be taken on board by statutory bodies to ensure that older people have a clear steer about what sorts of services should be provided for older people in their commissioning processes.

The Future Generations Act and Social Services and Well-being (Wales) Act should also steer statutory bodies to commission services based on population needs which include older people. The services commissioned should have due regard to include services or initiative that help to prevent/alleviate loneliness and isolation.

Why might carers feel alone? - Social isolation is about how many social contacts a person has, while loneliness is a feeling of a lack of companionship. Loneliness is a feeling that can come and go, or it can be something a person feels all the time^{^[i]}
Isolation and loneliness is something that many carers face as a result of their caring responsibilities. Contrary to popular belief loneliness isn’t always about being on your own.

Carers in general put the person they look after first which no longer leaves them time to meet other family or friends. Compounded by the extra costs of caring this may mean that carers can no longer afford to participate in social activities. It is therefore important that carers are identified early and provided with information about their rights as well as information on possible benefits they may be able to claim.

More must be done to improve understanding amongst the public and service providers about the impact of loneliness and isolation, including adverse impacts of health and well-being.

It is also important that carers are made aware of their rights and are made aware of any practical local support they may be able to access in order to allow them to spend time with family and friends, access local groups and any leisure activities they may wish to undertake to enable them to have a life outside of their caring role.

A carer’s needs assessment should be offered as soon as a carer is identified by statutory services.

A record must be kept of the number of carers identified and offered an assessment. Given that the for the vast majority of older people their first point of contact and regular contact is likely to be with a community based health service action could be taken by Welsh Government to encourage them to identify carers to ensure they are signposted appropriately to relevant organisations.

8 in 10 (83%) of carers who responded to Carers UK’s State of Caring survey 2014 have felt lonely or socially isolated because of their caring role. This is as a result of not being able to get out of the house much (55% rising to 64% for those caring for 50 hours or more a week); not being comfortable talking to friends about caring (36%); not having time to participate in social activities(61%); not being able to afford to participate in social activities (45%)
Finances - Social isolation can be a particular problem for those who are struggling financially as the costs of socialising are often the first thing that carers cut back on to make ends meet.

This has been compounded by a sharp rise in household expenditure and the impact of welfare reform changes which makes it difficult for carers to have any spare money for social activities.

The extra costs of caring and disability can also include higher energy bills, specialist food, higher phone bills, higher transport costs, having to buy specialist care products and having to finance aids, equipment and adaptations to the home. This is often accompanied by a steep drop in income if carers have to cut their hours at work, take on lower paid more flexible work, or take early retirement.

With 54% of carers struggling to pay household bills and 35% cutting back on essentials like food and heating to make ends meet ^{^[ii]}, it can be impossible to find the money for things like replacement care or even a coffee with friends.

Carers Wales State of Caring Survey 2015 just under half of those in Wales who responded to the survey (47%) who said they were struggling to make ends meet said that they were cutting back on seeing friends and family to save money; (61%) said that they were worried about the impact that their caring role would have on relationships with friends and family.^{^[iii]}

Carers Health and Well-being - Without the right support, at the right time carers often find their own health and well-being suffering as a result of caring. By putting their loved ones first, carers can put their own needs last and struggle to find time for themselves and their social networks. This can increase the feelings of loneliness and isolation which can have a serious impact on carers’ physical health, mental health and their relationship with others.

80% of carers who responded in Wales to our State of Caring Survey 2015 reported that caring has had a negative impact on their health. 73% said that they find it difficult to get a good night’s sleep while over half (51% said they struggled to maintain a healthy diet. Worryingly this also has a consequence on carers’ mental health with 87% reporting that they feel stressed, 79% saying that they felt anxious and 56% reported that they had suffered from depression as a result if their caring role.^{^[iv]} - “I have no time for myself at all any day”. “I am getting close to depression and all the doctor says is ‘go for a walk’. That’s OK if you can leave the person you care for!”

Relationships - Caring can be a fulfilling and positive experience for many people, however many people find that taking on a caring role can have a damaging effect on their relationships and social life which can lead to isolation and loneliness.

There are many factors that can affect carers’ isolation and feelings of loneliness including how often carers can see friends and family. Financial restrictions which I have mentioned above can impact as well as a lack of available and affordable replacement care or support services can impede carers ability to have a life of their own. Another major factor is also the condition that the disabled person may have that impedes their ability to communicate. An example would be an individual with a neurological condition which could exacerbate the feeling of loneliness even though the person is present.

Practical Support - Practical support with caring such as help from care workers or replacement care is essential for many carers to have a life outside caring and be able to maintain social relationships. Without this support, carers are often pushed to breaking point and have to give up work, take early retirement and social contacts and networks may be lost. Some may even find themselves having to give up caring and many end up with their own health problems. All the above can exacerbate the feelings of loneliness and isolation. It is essential that when carers come across any statutory agency be it health or the local authority that they are told of their rights under the Social Services and Well-being (Wales) Act and are offered carers needs assessments. Carers Wales State of Caring Survey 2015 found that: 43% of carers said the amount of care and support that had been arranged by social services had been reduced; 14% said that the care and support service had been closed and that no replacement was offered; 8% said that they had cut down on the amount of care and support they got because costs had increased. “I get three days of day centre but I can only get mam there once a week”. “I tried to get help from my local authority and from my GP but was told all they can do is provide a list of care agencies that would require payment”. “I was told by social services that no help is available”

Recommendations

Protect funding for carer support and ensure that there are adequate resources available to implement the Social Services and Well-being (Wales) Act 2014.

Ensure that there is robust monitoring of the Social Services and Well-being (Wales) Act 2014 to ensure that carers are being identified and offered advice, assistance or support to meet their well-being and other needs.

Increase efforts to identify carers across all statutory services including health and ensure that carers are signposted appropriately to support that will help meet their needs.

Ensure that the Declaration of Rights for Older People in Wales is widely distributed amongst statutory services to ensure that statutory bodies and service providers who work for, or on behalf of older people know what is expected of them to ensure the well-being of older people in Wales.

Ensure that there is access to regular, flexible breaks for older carers and understand the strain that caring can place on relationships and the ability to undertake social activities that may make carers less isolated and lonely.

Ensure that loneliness and isolation are issues that are embedded in all the Welsh Governments work including any strategies that it produces.