Our previous article looked at how the Health and Social Care (Wales) Bill will affect children and young people. This article looks at its impact on disabled and older people.
Part 2 of the Bill will introduce the option of direct payments for Continuing NHS Healthcare (CHC), aiming to improve voice and control for service users. This article explores some of the key themes from the evidence given during the first stage of the Senedd’s legislative process..
What does it all mean?
Direct payments allow people to receive cash payments to buy their own care and support services directly, for example they may employ a Personal Assistant (PA) or care worker of their choice.
Continuing Health Care (CHC) is a complete package of ongoing care, arranged and funded solely by the NHS, where an adult’s primary need has been assessed as health based. Direct payments are not currently permitted for CHC, which means that people using direct payments for social care have to stop if they become eligible for CHC. The Bill would change this, aiming to improve the interface between the two systems.
Evidence gathered by the Health and Social Care (HSC) Committe showed wide support for the general principles of Part 2 of the Bill, with a consensus that direct payments are a valued option to give people greater control over their care. Disability Wales said disabled people have been campaigning for this for many years, as direct payments “allow a level of flexibility that is not available under other systems.”
There were, however, a number of concerns about how this new law would work in practice.
Motor Neurone Disease (MND) Association welcomed the move, but said that “in order for this change to be impactful, it must come with adequate support and signposting, a clear plan to address the issues within the social care workforce and a review of the level of direct payments.”
WLGA and ADSS Cymru stressed “it is vital that this change comes with a significant improvement in how CHC works in practice.”
Staffing shortages will be a barrier
Its clear that the issues raised in our previous articles on the social care ‘workforce crisis’ and its impact on hospital discharge remain significant concerns today.
The Health and Social Care (HSC) Committee heard from many people that staffing shortages in social care (particularly domiciliary care) will cause a big barrier to putting this law into practice. Learning Disability Wales described the lack of available care staff as “the elephant in the room”.
The Older People’s Commissioner said “insufficient access to suitable domiciliary care will make it hard for the Bill to achieve its aims in practice”. She gave examples of recent cases her team were contacted about:
- A 94-year-old man, living with dementia and confined to bed, had been in hospital for six months longer than needed because the domiciliary care provider had withdrawn its care package and the local authority had been unable to find a replacement.
- A person had been told that their mother, who lived at home, might have to be taken into emergency extended care with no determined end date, not because she needed to be in a care home but because no domiciliary care was available.
- Another person’s mother had gone into a care home for four weeks for temporary respite but had to stay there indefinitely because no domiciliary care provider was available to enable her to return home.
Homecare Association said the Bill will increase demand for PAs and there is a danger this could lead to “labour market displacement”, with social care workers moving to work as PAs, reducing the (already scarce) pool of people prepared to be registered care workers. It said this happened in England when the change was introduced there.
Personal Assistants are like “gold dust”
Disabled people and stakeholders told the Committee that people are currently finding it difficult to recruit and retain Personal Assistants (PAs), largely due to low pay rates. Shahd Zorob (one of the disabled people who gave oral evidence) made a plea saying that something needs to be done urgently as she can’t recruit anyone on the current pay rate.
Health board representatives described PAs as “gold dust”, and said they weren’t convinced the workforce is there to meet demand, particularly for the next wave/generation of service users.
The Committee noted that recruitment and retention of personal assistants is a very real, practical problem for many people, and made a specific recommendation about this.
Consequences of a lack of care services
Stakeholders stressed that direct payments must always be a choice, and must not be used as a last resort because services are not available. However, the Committee heard this is already happening.
Carers Wales highlighted situations where someone has been assessed as having an eligible need, but there are no care workers available to meet that need, so direct payments are offered, “expecting service users to find someone to provide care, that in effect doesn’t exist”
The Older People’s Commissioner said that local authorities sometimes offer direct payments as a last resort, especially in rural areas, where there are particular problems with the availability of domiciliary care.
PAs are stepping in to fill a really important gap, as well as offering a wider choice and individual support. But, in some areas it has been the only way somebody in a rural area could get the support they needed, because there wasn't a homecare provider available.
Reluctance to enter the unknown with CHC direct payments
The Committee heard from disabled people and stakeholders that people might be reluctant to accept a CHC assessment and take up the offer of continuing healthcare unless there was a safety net in the form of a ‘right to return’ to local authority direct payments if they feel they needed to.
Carers Wales told the Committee:
I don't think we can underestimate, actually, the reluctance and, in some cases, fear people might have from changing their care package and potentially taking up continuing healthcare, even with direct payments. […] Unfortunately, we're not in a system where people are confident and optimistic about changing their care package and moving to a different provider, with that level of upheaval.
However, the Welsh Government and local authorities say that such a ‘right to return’ is not legally possible. The Committee said it regrets this and stressed this issue was a matter of real concern for some service users.
The Committee recommended that the Bill is amended to include a ‘right to information, advice and support’ for individuals seeking to take up direct payments for continuing healthcare. It hopes this right would go some way to mitigate the fear of the unknown with CHC. The Committee also calls for guidance to include information about transitions between social care and NHS continuing healthcare, and to promote continuity of care for individuals moving between the two systems.
Existing issues with Continuing Healthcare
The Committee heard about the lengthy disputes that can take place between local authorities and health boards around CHC and who should pay for the care. Local authorities say the eligibility bar for CHC has increased over time, meaning fewer and fewer people are being granted access. They believe the whole CHC process needs to be reviewed urgently.
The Minister for Social Care, Dawn Bowden MS, said the next review of the CHC Framework is anticipated to take place in 2026/27, which would provide an opportunity to consider incorporating additional guidance or clarification around eligibility for CHC.
What next?
There is broad support by many for the principles behind this Bill – both for children and adults, but big uncertainties about whether it will have the desired effect in practice.
On 22 October the Senedd will decide whether this Bill moves a step closer to becoming a reality.
Article by Amy Clifton, Senedd Research, Welsh Parliament
