I care full time for my husband who has a spinal injury and other medically complex needs.
This involves physical care and support including dressing, help with washing, and day to day living. I also help with all aspects of his continence needs, manage his medications and medical devices, attend all appointments with him, liaise with professionals on his behalf and deal with all aspects of running our home on my own – all housework, shopping, maintenance etc.
I do this for at least 40 hours per week; at worst, I can be caring for 70 plus hours a week. I also work part time for a charity.
In 2011, I reduced my hours in paid employment hours due to my husband’s changing needs. I moved jobs in 2015 to be closer to home but left the labour market in 2016 to spend more time with him. At one point in 2016, we had over 10 hospital appointments and were in pretty constant contact with our GP due to his poor health.
Leaving work meant losing my salary overnight – this was a significant financial hit for us. As a main earner, the only support we were entitled to was Carers Allowance (CA) (then c £64 per week) and we became dependent on my husband’s limited income. This had a massive effect on our financial security.
The additional CA uplift from the Scottish Government was a help, but still did not make up for a fraction of the money we lost – I cried when I first received CA.
In our day to day lives, we liaise regularly with a range of services – our greatest support comes from specialist and community nurses, our GP surgery, the National Spinal Injuries Unit and our local carers centre. We have not found our Local Authority (LA) or Health and Social Care Partnership (HSCP) to be helpful; at times, our limited contact with them has created more stress, not less.
Without the support of our local third sector carers centre which has covered respite and care support for my husband and alternative therapies for myself, I would have struggled to continue caring or to manage my own health. The practical support they offered in 2017 enabled me to have important surgery.
In 2016, we had to undergo the Disability Living Allowance (DLA) to Personal Independence payment (PIP) transfer for my husband. This was incredibly stressful – I did everything required to get us through. This included gathering evidence, completing the 40 page form, liaising with ATOS and the Department for Work and Pensions (DWP) – the former admitting fault after the face to face assessment. This experience had a profound effect on my own health. Our local MP was a tremendous support – the local authority welfare rights service less so.
As I scan the policy and political landscape, it’s hard not to feel that our family does not matter – that we have been abandoned. We are entitled to no financial support, and I lost all CA when I increased my working hours last year. We are penalised because we have savings. We are not entitled to the Carers Discount in Council Tax because I am caring for my spouse. Our council tax has recently increased by over 9% across two years – our income has not increased by anywhere near that amount.
Being married works against you in the benefits system.
There is little real, practical support for spouse carers or recognition of the emotional impact that this brings. It is assumed that wives and husbands will pick up caring roles – regardless of whether couples would choose for this to happen.
Projects or support services
Our Carers Centre in Paisley have been able to offer me practical help e.g. with access to therapies to help with the physical impact of caring.
Through its respite and home care services, this charity provided tailored, personalised support to us in 2017 to allow me to go in for surgery. They provided practical care to my husband and to me, enabling me to take a couple of weeks to recover before moving back into my full time caring role.
We have superb support from our GP surgery which very much recognises my role as a carer. They are flexible and generally offer responsive services around my husband’s needs. They also listen and try to offer support to me. Support from Community Nurses, from the Spinal Unit and other primary care services has often been what has kept us going at some of our darkest moments. We are eternally grateful.
We also have the Community Alarm – we pay for this (£180 per year). This provides security for my husband if I am not at home and also in emergencies.
More broadly, I am part of a wider network of carer and disability activists who support each other and share important information on social media. These are the most amazing and amazingly brave people who offer mutual support when we are struggling and we work together to share policy and practical information across a range of virtual networks.
We are also supported by my employer who has offered a very flexible response to my caring role and indeed, has built a job around my needs. I could not continue working without that support and understanding.
I am also on the board of a women’s charity which works its board meetings and other work around our needs.
How do you think carer’s voices could be amplified and engaged in policy making (by everyone involved; government, third sector, local authorities etc)?
The issues affecting carers have slipped down in terms of political priority. There is an assumption that because we have the Carers Act and the Carers Allowance uplift that carers’ issues are ‘done’ politically and in policy terms. Nothing could be further from the truth.
There are many missed opportunities to involve carers directly in planning and key groups e.g. I raised the possibility of having a carer on Carers Allowance on an important social security advisory group a couple of years back and was told no. The Social Security experience panels have yet to understand the need to have better notice about events and to plan around the needs of carers e.g. parents of disabled children.
In public services, and more specifically when writing and developing policy, it is absolutely imperative to involve those with lived experience and those at the hard end of policy. Without this, trust is not developed and the real impact of a new service, Act or approach is not understood or considered.
The issues with social care, self-directed support, care charging, and so on have been raised directly with Ministers and MSPs – and sadly those who do raise them are seen as being “difficult”. Concerns raised by carers are often ignored – and yet, they prove to be right on the money on many occasions. See the work of the Coalition of Carers in relation to the Carers Act. The issues highlighted in this work were raised by carers as the Act made its way through parliament.
The key challenge in ensuring carers’ voices are heard and influence policy is that of trust. Carers have largely lost faith in politics and policy making. Despite well intentioned national policy, little has changed or improved for them. Indeed, life is getting harder as public services are cut back and social care is open only to those with critical needs.
Rebuilding trust is a crucial first step and that means doing policy differently. There is still too much ‘done to’ and not ‘done with’ carers, and a language in public policy which is off putting and exclusive.
Each year, carers across the UK and now in Ireland hold a #realcarersweek campaign which coincides with the Carers week events run by a range of charities. I facilitate this and this year, we pulled together a list of key asks and requirements including having a carers session with the Scottish Cabinet, Minister for Care and Caring and calls to better involve carers from the outset. We would be happy to share this as a starter for 10 for ideas/actions to take things forward.
What would good policy coherence/policy making look like which would make a positive difference to your life?
Better cross fertilization across different areas of policy.
Having a carer adviser/champion at Cabinet level and working with key Ministers and officials. At present, caring sits as part of a junior Minister portfolio and it appears to us that there is little done to ensure that the issues affecting carers and chance to improve their lives are taken across different government departments. That may not be the case, but there is nothing visible to carers out here.
Having and supporting carer representatives (not just carer organisations) on key groups e.g. Ministerial Strategic Group health, Disability and Carer group, social security, and across other areas would bring the voice of carers into the heart of the policy bubble. That requires investment, flexibility and taking policy processes to people.
The Carers Parliament format needs to be reviewed and there needs to be real buy in from Ministers at senior level. It also needs to be held in the Scottish Parliament… this is an important message about the value of carers, and that they do matter.
I would love to see a Carer Special Adviser!
We must consider how we make the work being done at national level more relevant to carers in their daily lives and increase the visibility of carers and policy initiatives. Rebuilding faith in politics and policy making is a necessary first step in developing better and more responsive public services.
What do you think are the main issues impacting the lives of carers?
The decimation of social care – a huge issue made worse by bureaucracy and gatekeeping at local level.
Honesty about the ways in which disabled people and carers are treated – that we are facing human rights issues and breaches across the board. Remember my point about trust!
How far for example, has the Adult Social Care reform programme reached to find out what people think about social care? Has it reached into communities affected by social care cuts? It is not visible in the wider carer community.
Care charging remains a major issue for some families – often pushed into poverty as charges take up most of their disposable income.The recent announcement on removing non-residential social care charges is welcome but leaves more questions about eligibility, about residential charges not linked to free personal care, about sustainable funding for social care and the need to better understand the profoundly positive impact that social care and linked community services can have on disabled people’s lives.
There is a lack of trust in public services which seem to make things more difficult for families. That’s a key issue. Bureaucracy in public services e.g. health and social care, housing and a broken benefits system combine to create real stress for disabled people and unpaid carers.
There are real concerns about the experience and poor outcomes for families with learning disability – carers have real concerns and worries on a number of fronts in terms of support in communities, about poorer experiences within the NHS and the lack of effective future and emergency planning for disabled people – what happens when carers die or are unable to care?
The health and wellbeing of carers is often taken for granted. We are storing up a time bomb of health needs for the future by NOT supporting carers effectively.
It comes down to one thing for me – do disabled people matter? Do carers matter? Let’s pause and reset and start building a better future together.