Weekly Poll – A Scotland That Cares

Each week Disability Equality Scotland sends out a poll question to our members on a topical issue. For the week beginning 13 February 2023, we asked our members about the ‘A Scotland That Cares’ campaign. Please note this is a snapshot of the views of our membership and does not reflect the policy stance of Disability Equality Scotland. If you plan to reference the findings featured in this report, please contact us in advance so that we are aware of this.

Prior to receiving this poll, were you aware of ‘A Scotland That Cares’ as a campaign?

  • Yes- 32%
  • No- 68%

Now that you know about the campaign, would you support the campaign through taking an online action via the website (sending all Holyrood party leaders a customised email about why care is important to you)?

  • Yes- 87%
  • No- 13%

The campaign recognises that all forms of care are currently undervalued – whether that care is provided on a paid or unpaid basis, whether it is for children or adults, and whether it is for people with or without additional support needs. When considering the above, do you provide paid or unpaid care to a family member, friend, or a member of the community?

  • Yes- 54%
  • No- 46%

Comments:

We provide verbatim comments where appropriate to illustrate strength of feeling or personal experience.

Many respondents found they back the campaign and will now be taking steps to support it further. However, many respondents had been unaware of the campaign before reading about it through our weekly poll. One issue that was identified was that getting involved with the campaign needs to be accessible and available in different formats to accommodate access requirements. For example, providing Easy Read and having the option to act either online, through letter or email, or via the telephone.

‘My disability means I need Easy-Read to understand. Would I be able to write an easy-read letter to them? If you want to represent the views of the cared for then you have to make sure they can contribute to the campaign’.

There were some concerns around the feasibility of the campaign within the current political climate. It feels that carers and disabled people are not a priority for political leaders and that cost will prevent further support being provided for them. Respondents also shared their experiences of providing care and how challenging this is given the lack of sufficient support.

Respondent identified that caring is difficult given the lack of financial support available and the challenges of accessing Carers Allowance especially if you are receiving another form of benefits or income. Carers often end up working on a full-time voluntary basis so cannot work alongside this so without alternative financial support many carers experience significant stress. If carers can work alongside caring, it is stressful to balance these responsibilities especially if taking on more hours due to insufficient financial caring support.

‘In my experience Carer’s Allowance and its Scottish top-up were nowhere near enough to live on’.

‘The benefits system is completely unfit for purpose with respect to carers – there are arbitrary limits to when you can claim benefits… Caring for someone can be expensive – you can’t claim expenses back and you can’t get any help’.

Caring can be even more challenging for people who are disabled themselves, have chronic health conditions and/or are experiencing changes in their health. There is not sufficient support available for all carers, including non-disabled carers, so the impact of this is felt more intensely by disabled carers.

‘I have been caring for my husband day and night following his brain injury… I now have a rare condition little understood by the NHS and receive little or no support for this condition… I am very tired and very sick a lot of the time.’

‘I am a wheelchair user with a movement disorder but am expected to care for my mother. There is a 10-month wait to get a local Home Support team to confirm shower time so I can stop getting out of my wheelchair to assist her’.

Another key issue is there is a lack of practical support for carers and not enough awareness around what help is available. This is especially the case since the pandemic where many services and supports stopped operating fully and have not returned to normal.

‘Very little assistance offered, you have to seek out information and make your own help. It’s a maze of forms, appointments and applications, you depend on other carers for info and help’.

‘Not everyone knows about social work grants and what is on offer until they are in crisis’.

‘Finding a support organisation is difficult. I work and find it hard to get support as a carer outside of office hours’.

Due to the lack of support and challenges with accessing professional care, the emotional and physical strain on carers is extreme. Carers are not fully appreciated, and more recognition and respect must be given to the work they do.

‘I think that care is undervalued in Scotland. If only half of the unpaid caregivers stopped doing the role they do, both the NHS and Social Care services would collapse due to the demands placed on them’.

‘I was an unpaid carer providing care to someone with a long-term neurological condition… Professional care support at home is rationed… I was expected to provide 24/7 care. I was drowning in providing this care. My physical and mental wellbeing was adversely affected, and no-one noticed, let alone cared. As a carer I has become a commodity of the social care system’.

Conclusion

The main takeaways are there is much support for the ‘A Scotland That Cares’ campaign but there needs to be more awareness raised. Supporting the campaign needs to be made accessible for people with various access needs by providing accessible communication options. This campaign is important given the current situation for carers in Scotland where they are overworked, underpaid, and subject to intense stress. There is not enough financial, emotional, or practical support for carers, especially those who are disabled, and not enough awareness of what support is available. We need to recognise the work that they do and take more action to alleviate the current strain on carers. This campaign is an important step towards this, hopefully providing more respect for carers and their vital role in our health and social care system.