“With an ageing population, carers are getting older too – it feels like we’re running towards a cliff edge”

On Carers Rights Day, the National Assembly’s Health, Social Care and Sport Committee is calling on the Welsh Government to take decisive action to ensure that carers have the rights and support promised by Welsh Government legislation in 2014.

96% of annual care in Wales is provided by unpaid carers, who are estimated to have an equivalent value of £8.1 billion a year to the Welsh economy. By 2037, over half a million people will be providing some form of informal care.

Despite this, the Committee’s inquiry into the impact of the Social Services and Well-being Act 2014 on carers has found that, for many, the Act has failed to have any meaningful impact on their lives. Being unable to access information, advice and much-needed support has left many carers feeling forgotten about and undervalued. The Committee has called on the Welsh Government to demonstrate stronger national leadership in support for carers to improve this situation urgently.

Young carers

Wales has the highest percentage of young carers in the UK. The challenges that come with being a young carer mean that they face worse prospects than their peers in many respects, including in terms of employment and access to higher education

Yet, in its inquiry, the Committee heard that the prioritisation of young carers has declined in the last five years and is worse since the introduction of the Act. As part of its work, the Committee heard directly from young carers about the things that matter to them, including better awareness and recognition of young carers by schools.

The Committee has set out a number of recommendations for young carers, including a call to strengthen guidance for schools to identify and support young carers and for a young carers’ ID card scheme to be rolled out nationally.

Deanndra Wheatland from Swansea is now 20. Deanndra lost her father when she was 17 and cared for her mother until she passed away. Deanndra gave evidence to the Committee’s inquiry, sharing her experience of what it was like to care for her mother whilst still at school.

“Being a young carer often left me and others in my situation feeling tired, angry and frustrated. When I was at school I was caring for my mother alongside doing my GCSEs, this was very hard to manage. There were times when I would spend all night at the hospital and then go straight to school, some mornings I didn’t have any time to sort myself out before I went to school because I was helping my mother.

“I think teachers need training on what a young carer is and what they have to deal with on top of school. I had some fantastic teachers who helped me out and were very understanding and gave me extra time with my homework. But I also had some teachers who didn’t understand at all and made life quite hard, especially during busy periods such as exam time. Teachers need to realise that it’s not an excuse, being a carer is hard work and there needs to be some leeway. I believe there should be consistency with teachers, they should all be understanding – I also think there should be a dedicated teacher for children to talk to about what’s going on at home.

“I know other young carers who don’t feel it’s possible to talk to teachers and tell them what’s happening at home – this should not be the case, everyone should feel comfortable to let them know what’s going on.

“Young carers deserve rights and recognition for what they do. In the future I want to hear young carers say positive things and tell me they’ve had plenty of help and support at school.”

Dr Dai Lloyd AM, chair of the Health, Social Care and Sport Committee said:

“Unpaid carers are the cornerstone of community care. They are responsible for delivering the vast majority of care in Wales.

“Without them, the social care system would face collapse. Yet many feel desperate, undervalued and that they are treated with little respect.

“Looking ahead, the role of the carer will become even more important given the demands of an ageing population with increasingly complex health needs.

“In view of this, it is disappointing to hear that things have not improved for carers under the Act, In fact, for many that we heard from, cuts to local authority and health service budgets have meant that vital support services are not being delivered.

“The Welsh Government must act now to ensure that carers have the rights and support promised by the Act.”

Linda Jaggers from Glynneath has been caring for her husband for 10 years. Her husband has a number of health problems including dementia. Linda herself has health problems such as diabetes and osteoporosis.

Linda gave evidence to the Committee’s carers inquiry and commented:

“Life is tough as a carer. I speak to a lot of other carers and it’s clear that it gets harder as a carer the older you get yourself. I’m 67 and my husband is 75, can be physically and emotionally tiring. I manage to get away for a weekend to see my grandson every 3 months but leaving my husband is a lot of work in itself, a lot of friends will pop in to help while I’m away but it takes a lot of planning.

“I went through the process of a carers assessment – I received £600 a year to help with some respite. If I didn’t have a good sense of humour I would find this insulting. Carers in Wales save the state billions every year but we are almost invisible.

“It seems to me and other carers that there a lot of top level good intentions from government but it’s not filtering down to help carers. Carers are feeling frustrated and tired and they deserve acknowledgement for the hard work they do, we should be celebrating the work they do and recognising the money they are saving the government.

“With such little help and support available, it’s no wonder many carers don’t feel like applying for an assessment, which can often be intrusive and make people feel like they are being judged. At the moment the law says that local authorities have to carry out an assessment in a ‘timely manner’ – this can be interpreted in many ways, sometimes taking 3 months to happen. In a carers world 3 months is a very long time and a lot can change.

“With an ageing population, carers are getting older too. It feels like we’re running towards a cliff edge at the moment. The Welsh Government should be doing more to help and support carers, acknowledge the invisible work they do and services available should be far more responsive to carers needs.”

After a comprehensive inquiry, taking evidence from experts and carers from across Wales, the Health, Social Care and Sport Committee has provided 31 recommendations for the Welsh Government (see below for full report), including:

  • It must prepare, within 6 months, a clear action plan for addressing the failings of implementation of the Social Services and Well-being Act 2014
  • It must plan now for the anticipated rise in the number of unpaid carers
  • It must undertake a major publicity drive to raise awareness of the Act and carers’ rights under it

The Welsh Government has commissioned the University of South Wales to undertake an evaluation of the Act which began in November 2018 and will be published in 2021. However, the Committee has stated that this should not delay implementing the recommendations of this report.