Senedd Cymru | Welsh Parliament
Y Pwyllgor Iechyd a Gofal Cymdeithasol | Health and Social Care Committee
Bil Iechyd a Gofal Cymdeithasol (Cymru) | Health and Social Care (Wales) Bill
Ymateb gan Motor Neurone Disease (MND) Association, | Evidence from Motor Neurone Disease (MND) Association,
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We broadly welcome the principles contained within the Bill and we do believe there is a need for such legislation to deliver the state policy intentions.
However, we are concerned about the implementation of these changes which will be detailed below.
Yes
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We welcome the amendments to enable the introduction of direct payments within NHS Continuing Healthcare.
Motor Neurone Disease (MND) is a fatal, rapidly progressing disease that affects the brain and spinal cord. It kills a third of people within a year and more than 50% of people within two years. MND is a lifelong disease for which there is no cure.
Due to the complex and rapidly progressing nature of the disease, the care and support needs of those living with MND are highly variable and continually changing. This means that those living with MND require care which is both specialist and flexible. We believe that direct payments allow those living with MND to source their own specialist care providers who will be able to deal with their complex needs.
However, in order for this change to be impactful, it must come with adequate support and signposting, a clear plan to address issues within the social care workforce and a review of the level of direct payments. Further information on this will be detailed below.
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As outlined above, we have three main ongoing concerns that will affect implementation of the Bill’s provisions surrounding direct payments for continuing health care (CHC):
1) Adequate support
We are concerned that not enough information is contained within the Bill to communicate changes in legislation and processes to people in Wales at present. We note the discussion during the evidence session with the Cabinet Secretary for Health and Social Care surrounding the changes contained within the Bill, most notably the need for better help during the transition process, particularly for those that are new to CHC. We are aware there are many concerns around the move to CHC and many challenges faced by people living with MND and their carers in accessing CHC and particular issues with the decision support tool, which is limited and does not always support effective communication and decision making. While we welcome the Cabinet Secretary’s reassurance that support will be provided on a Hub basis, we believe more detail and more proactive, targeted support is needed. We also urge Welsh Government to ensure that those who do not wish to use direct payments may continue to have the option of care arranged on their behalf.
2) Social care workforce
The move towards more flexibility with direct payments will not be a positive change unless it is accompanied by a sustainably resourced social care workforce that is readily available to deliver the support needed. Direct payments are of no benefit in areas where care staff with the required skills and training are not available.
We welcome the recent publication of the Welsh Government’s Social care workforce delivery plan 2024-2027. We do believe range of measures outlined will improve wellbeing and retention within the social care workforce. However, the plan does not contain information on how to increase rather than simply maintain current levels of staff within the workforce and lacks any concrete targets to deliver effective change in the short term. We must be clear that our concerns around staffing levels are impacting people living with MND currently and more ambitious, more rapid guarantees are needed from Welsh Government to improve the quality of life for those living with MND in Wales.
3) Level of payments
In a previous response, we highlighted the need for direct payments to be set at a level that allows people living with complex conditions such as MND to access the specialist care they need. Generic care provision is inadequate for people living with MND as they commonly need specialist expertise and staff with specialist training to support with equipment such as artificial respiration, communications equipment, and mobility equipment. Such specialist care comes at a much higher cost than generic support packages provide, and direct payments must be set at a level corresponding to this level of need.
We are also aware of discrepancies in the approach in implementing CHC between different local health boards (LHBs) in Wales. For example, in North Wales, those requiring riser recliners cannot access them via local authorities and have to access via the NHS and in some cases the LHB will only provide a wheelchair. It is vital that the level of payment is the same across Wales, so that people living with MND and their carers have equal access to support.
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While we appreciate there may be some upfront costs during implementation, we agree that these will be offset by a reduction in outturn costs as set out in the Explanatory Memorandum.
We believe the introduction of direct payments could result in cost saving for Welsh Government as sourcing specialised care individually may be less costly than social care provision. As no two cases of MND are the same, direct payments would allow for a more personalised care package which may, in turn, lead to both less surplus expenditure and more rapid delivery than traditionally commissioned CHC.
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