Who cares for the carers?

This is a term we have heard mentioned often over the years, but what is the answer?

Back in 2010, we saw the Caring Together Carers Strategy published, promising support and recognition for the role unpaid carers provide, building on the recommendations made within the early Care 21 report: The Future of Unpaid Care in Scotland.

Most recently in 2019 NICE (National Institute of Clinical Excellence) published new draft guidance which aims to improve the wellbeing of adults who provide unpaid care for people over 16 years old. The recommendations made tasked the local authorities and health and social care partnerships (HSCP) to identify how they provide support to carers. In the main, this was to assure that they would direct people to the appropriate financial, social and emotional resources that are available.

This month saw Carers’ Week celebrated and at no other time was this more poignant.

New figures show that 392,000 became unpaid carers in Scotland in a matter of weeks, caring for older, disabled or seriously ill relatives or friends during the pandemic.

This is on top of the 729,000 unpaid carers in Scotland who were already caring before the outbreak, bringing the total to 1.1 million.

Throughout the pandemic, we have celebrated the contributions of all health and social care staff but sadly there was not the same celebration provided for informal carers, with many having had to continue to manage with the limited supports available during the lockdown, but at what cost?

Being an informal carer may sometimes be a choice and can be very rewarding, but for many, it simply is a result of circumstance where people are left feeling duty-bound to step up and take care of their loved one. Some people may feel emotionally pressured whilst others simply do not wish to involve others. It is therefore important that we advocate where possible for those who feel powerless, who feel that they have no voice and that their concerns are not being heard. Despite recommendations, many continue to feel they are not listened to, which may make some reluctant to ask for help.

This undertaking is difficult enough when you are supported in this role but for a significant number of people, they simply are trying their best in an extremely difficult situation and often at a huge detriment to themselves emotionally, physically, financially and psychologically.

As the age of our population increases so does the age of those finding themselves in a caring role. We recognise that promoting healthier lives and living longer increases the possibility of caring duties.

Older people, some even retired themselves may have to look after their parents, who will be living to significant old age, as well as their own partners and perhaps even caring for grandchildren.

As time goes on, if no services are involved in supporting the care needs, the carers can often experience burnout which can result in finally asking for some help or for some making the difficult decision not to carry on.

Sadly sometimes the first that services realise someone is in a caring role is when either the carer or one they are caring for becomes unwell and appears at hospital.

Unfortunately, this was something I witnessed far too often over the years as a nurse and as a social work manager within the hospital, a sharp reminder that we are continuing to fail the most vulnerable people within our communities when you see an elderly man has lost his life and his wife that he cared for having to be placed in care. There are too many invisible vulnerable people within our neighbourhoods. We must promote the need to ensure people’s wishes are adhered to and facilitate the use of the power of attorney and welfare and financial guardianship to avoid the sad indignity that results when these protective measures have not been addressed. Having a relative sit for months in a hospital bed because they have no capacity and no legal rights to place someone in a homely setting is a real injustice.

As we move on from the impact of the pandemic this may be the case for many, as we have noted the traumatic effects of being confined as a carer during the lockdown, highlighting the responsibilities in caring for someone you love with limited resources and lack of social interaction.

We know that respite for some allows that time out, to recharge batteries to continue, however respite is not accessed by all for a number of reasons, with some feeling they are failing the person they care for, or that the person being cared for would become distressed at the thought of it.

This highlights the importance of firstly to offer this resource and secondly to ensure that the respite experience is one that gives benefit to both the carer and the person requiring care.

Respite care in Scotland has thankfully now changed and does not now necessarily mean the person has to leave their home, which provides greater flexibility. I can recall a young father who had a degenerative condition who simply wanted to allow his wife and sons a break but to have respite in his own home. Unfortunately, bureaucracy prevented this at that time and that sense of failure stays with you. Everyone should have the right to have care around the personal outcomes, especially with a life-limiting condition.

Older carers who are looking after someone with dementia can also find it difficult to cope with the changes in the personality of their loved one. People with dementia can become easily frustrated, aggressive, and suspicious of other people. This can be extremely damaging to the carer’s emotional wellbeing. We can all think of someone who has experienced this distress.

In 2015, an estimated 47 million people were living with dementia throughout the world, with this number expected to triple by 2050. Several studies have highlighted respite support is an unmet need for people caring for someone with dementia, this may be due to limited specialist places who offer respite, alongside the difficulties around this being communicated to the carer, and at times the carer’s inability to seek this information out. In addition, as mentioned earlier respite may not cause further distress and behavioural upset.

During the pandemic, this may have been compounded by a reduction in social work assessments, alongside some councils making the decision to change the criteria for access to care, which left many without additional support and only limited new care packages, with families requiring to step. Closure of daycare facilities has been viewed as a particular hit for many carers who have previously relied on the respite these services provides.

Scots who have started caring since the outbreak may have been able to simply because they were shielding or furloughed. We know many were new to this but some are also juggling paid work alongside their caring responsibilities, highlighting the need for working carers to be supported as they return to work. Estimates show that the care provided by friends and family members to ill, frail or disabled relatives is equivalent to £119 billion every year.

It is without question that services could not manage the demand if informal carers did not exist.

The six charities supporting Carers Week – Carers Scotland, Age UK, Carers Trust Scotland, Motor Neurone Disease Association, Oxfam GB and Rethink Mental Illness – promoted the need for further reform to happen which recognises and raises awareness of the role unpaid carers are playing during the pandemic and ensure they are supported through it, and beyond.

One success, however, was the recognition of unpaid carers as key workers with the right to access testing.

As reported by The Princess Royal Trust for Carers 65% of older carers have long term health problems or a disability themselves, with 69% saying that being a carer has had an adverse effect on their mental health. Older carers also report that their role makes it hard to find time for social life and isolates them from friends. We must also acknowledge that illness and disability in old age can create a large financial burden for some people. Carers may have to find the additional money to pay for specialist care or necessary equipment.

Over the next 30 years, the number of carers will require to increase by 3.4 million (around 60%).  Much has been spoken about this over the years but as carers become older themselves the ability to cope is likely to decrease significantly and result in crisis situations. Contingency planning and the need for more investment in community capacity building must be at the forefront of social reform.

As we acknowledge the fact that services will need to look different moving forward it is fundamental that we ensure that we don’t forget those within our communities who have undoubtedly been affected by the pressures of COVID and lockdown.

We need to move away from crisis management to avoid the unnecessary and distressing results that bring for carers and their families. People should continue to have choice and control and remain within their own homes for as long as possible even if they have 24 hr care needs.

The whole criteria of assessment of need, needs to be reviewed to ensure clarity and intrinsically have a preventative measure to avoid further failures in the future.

We must ensure greater recognition of the responsibilities carers are under ensuring their health, wellbeing and personal protection, especially as there is a significant potential risk of a second wave, bringing with it an additional loss of lives, as we move into the flu season.

We must advocate for reform and ensure personalisation, equality, respite and support that has a direct benefit to carers health and well -being or we are undoubtedly failing this country’s unsung heroes.

Jacqui Neil

Transforming Workforce Lead for Nursing