State of Caring 2022

Nov 11, 2022
  • More than half of carers have been waiting 6 months or more for NHS assessment or treatment, with two thirds seeing their health decline whilst waiting
  • A third of carers have not had a break from caring in the last year.
  • Added to cost-of-living crisis and lack of social care in the community, carers are breaking; physically, mentally and financially

Unpaid carers and the older and disabled people they support are facing serious difficulties getting NHS treatment and their health is deteriorating as a result, new findings by charity Carers Scotland shows.

Read and download the full report here.

Half of carers (52%) have been waiting 6 months or more for specialist treatment or an assessment - with a third of these carers waiting for over a year.  A similar proportion (47%) saying the person they care for has also been waiting for more than six months, with 30% waiting for over a year.

Two thirds of carers (67%) waiting for treatment say it is having a negative impact on their mental or physical health - with many left in pain and struggling to carry out their caring role.

“I care full time unaided for my husband. We are both 78. We have been on a waiting list for 8 months.  They are apparently dealing with crisis only and we have had NO help at all. It is pointless ticking boxes; help is not available here. I cope but am exhausted and my mental health suffers. My husband has advanced dementia and in order to continue caring I need help.”   [Carer, State of Caring 2022]

It is affecting a third (30%) of carers’ ability to continue paid at work and two thirds (67%) saying waits for healthcare are affecting the physical and mental health of the person they care for, making caring even harder.

Nearly two thirds of carers (62%) were not involved in the decisions about discharging the person they care for from hospital.

“It was a shambles. [My] husband was discharged with very low blood count and no explanation given regarding infection he had. 5 weeks later he was back in, seriously ill with sepsis. No advice given and GPs never followed up with anything despite being assured by the hospital consultant that this would happen. Complete breakdown in communication between services and no thought or support for the person who is left caring.” [Carer, State of Caring 2022]

Discharge was often followed by inadequate care being put in place, with less than a fifth (18%) of carers saying they received sufficient services to protect the health and wellbeing of the person as well as their own health.

“Still awaiting stairlift after 11 months, still washing at sink, no toilet or shower access as [they are] upstairs - totally discriminated against saying “no” as mum has dementia. Mum is supervised by me 24/7…just left with nothing.” [Carer, State of Caring 2022]

Reduction in social care services in the community is further adding to the strain to the physical, mental and financial strain for carers, with a quarter of carers saying their care at home services had reduced, and nearly half (44%) that day services have reduced. 

Worryingly, 1 in 7 (14%) carers have been told there are no services available in their area and over a third (39%) have not had a break in the last year.

“There has been no help for me. I asked for help for my mum 5 months before residential care - there was none available. I am a single parent going through a tricky divorce. I have to work almost full time to feed and clothe my family. my mum is widowed and an only child. It has been hell.” [Carer, State of Caring 2022]

A significant proportion (16%) of carers told the charity that they have concerns about using support services as they are worried that the person they care for will catch COVID19.  These carers, and the people they care for continue to live isolated and unsupported – facing loneliness, poverty and ill health.

And, in this cost-of-living crisis, the rising costs of care services is worrying carers, with almost over one in five carers (16%) saying the cost of care is too high and a quarter (27%) of those carers struggling to make ends meet saying they won’t be able to afford services or practical support in the future. 

Richard Meade, Director of Carers Scotland said:

“The findings of this year’s State of Caring show the devastating effect a lack of support has on carers – with every area of their lives impacted. Even before the pandemic, too many were caring without the support they needed but this survey shows increased poverty, lack of practical support and breaks and long waits for the very services that will keep carers healthy and able to continue caring.

 “UK and Scottish Governments cannot and must not in good conscience allow this to continue – it is unsustainable.  Without support, more and more carers will quite simply break - financially, emotionally and physically – at great cost to individuals, society and our health and care systems. 

 “Carers need financial help and practical health and care support right now to ensure they can make it through this Winter.  But this must kickstart real change - anything provided must be seen only as a down payment and must be followed by a real and long-term commitment to fundamentally changing carers lives so that in the future becoming a carer will not mean poverty, inequality and ill health.”

Carers Scotland is also urging the new Prime Minister and the Scottish Government to uprate carer benefits in line with inflation at the earliest opportunity to support hard-pressed carers so they can afford to eat and heat their homes, preventing the health impacts on both them and the person they care for.

Carers Scotland wants to see carers receive a winter top up payment to help them manage over the coming months and an energy payment for people with severe disabilities to help households manage the extra costs of heating.

Click here to read and download the report in full.