The Chancellor of the Exchequer, Rt Hon Jeremy Hunt MP, made an Autumn statement in the House of Commons on 17 November, which sets out the UK government’s plans for spending and income gathering in the near future.
Parts of this statement can be seen to acknowledge the perilous position that people, councils, and health and care services are facing financially. Healthcare is one of the only areas which saw an increase of spending.
However, for people living with long-term health conditions – who need high quality health and social care from a range of services, who may be receiving disability or means-tested benefits, or who require higher than average energy use to stay well – this statement isn’t a solution to the rising costs they’re facing.
As the charity representing over 110,000 children and adults living with a neuromuscular condition in the UK, we’ve investigated how the rising costs of living will impact people living with a muscle-wasting condition, and campaigned to improve access to a variety of NHS services to meet these complex care needs.
We’ve looked into the changes which are especially relevant to people living with a neuromuscular condition.
State support and benefits
Keeping up with inflation
It was confirmed that state pensions and disability benefits such as Personal Independence Payment (PIP), and means-tested benefits such as Universal Credit, will rise in line with inflation (increasing by 10.1% in April 2023).
We understand that this decision will be a relief to some people receiving this support and may partially alleviate some of the financial burden people living with a neuromuscular condition and their families are facing due to the rising costs of living.
Additionally, carers allowance as part of the benefits rise is welcome, but we have previously suggested that this needs to go further, with the allowance rising to equal 35 hours at National Minimum Wage.
These types of support are devolved in Northern Ireland, so any rises are up to the Northern Irish Executive. Some disability benefits are also devolved in Scotland, meaning the Scottish government decides how to increase them.
Energy bills
The cap on typical household energy usage (the Energy Price Guarantee) will be continued for another twelve months from April 2023. However, the cap has been raised by £500, meaning that the typical household would now pay £3,000 a year instead of £2,500.
However, this cost is based on a typical household, so households with higher energy usage could still pay more. The government will also double the level of support for households that use alternative fuels to heat their homes to £200.
One-off cost of living payments
There will be more one-off cost of living payments targeted to help people with the rising costs of energy – £900 for households on means-tested benefits, £300 for pensioner households, and £150 for people receiving disability benefits.
This one-off payment is a partial acknowledgement that people with a disability may require more financial support with energy costs. However, it may not match up to the additional energy usage and associated costs for people living with a long-term condition.
Testimonies from people with muscle-wasting conditions, such as Trevor, and those who took part in our cost of living research show that £150 will not alleviate the pressure of rising energy costs for every person living with a muscle-wasting condition.
People living with a muscle-wasting condition need to spend far more on heating to avoid their muscles stiffening from the cold, and a great deal more on electricity to charge equipment or run ventilators. We think there needs to be further support to make these costs manageable, so people don’t have to make difficult choices like not using their specialist equipment.
National Health Service (NHS)
Funding
In England, the NHS budget will increase by £3.3bn a year for the next two years. This will also mean larger payments to devolved governments in Scotland, Wales and Northern Ireland. This has widely been seen as a measure to deal with the inflationary pressures the NHS faces.
While going some way to dealing with the increases in financial pressure, this funding may not go far in dealing with the main problems faced by the health system, such as staff vacancies and increasing backlogs.
These problems will have an impact on the speed of assessment and treatment, as well as access to specialist neuromuscular health professionals – two crucial requirements for people living with a muscle-wasting condition. Without these, improving symptom management, increasing quality of life, and reducing emergency admissions all become more difficult.
Workforce planning
It is welcome that the Department of Health and Social Care and the NHS will publish independent plan for numbers of professionals needed in 5, 10 and 15-years’ time. There was no mention of funding to support such projections, but it will be helpful for many to see the forecasts.
There are currently crucial shortages in specialist neuromuscular health professionals in the NHS and we have been calling for more support to retain and upskill specialist staff, as highlighted in our report on the impact of Coronavirus on neuromuscular services.
Reducing ‘postcode lottery’
In July 2022, Integrated Care Systems (ICSs) were formally introduced with the aim of providing more joined up health and social care that better meets the needs of local areas. There are now 42 ICSs operating in England.
Earlier this year, we published two reports with recommendations for how ICSs can help implement best practice care for people living with neuromuscular conditions.
As part of the Autumn Statement, Jeremy Hunt stated that there will be an independent review of ICSs to “reduce disparities and improve health outcomes across the country”. As Chair, Patricia Hewitt will be advising how ICBs (the part of the ICS responsible for planning and funding many NHS services in the area) can operate efficiently and with “appropriate autonomy and accountability”.
We’re campaigning to reduce variations in the quality of in health and social care service provision experienced by many people living with neuromuscular conditions, so we welcome this planned review.
Social Care
The social care sector will receive up to £2.8bn next year and £4.7bn the year after from increased direct central government funding (£1bn next year and £1.7bn the year after) and increased council tax.
This is a short-term lifeline for the sector, which is on the brink of collapse. High levels of unmet need and a shortage of care workers have been widely reported. These continue to put a huge burden on undervalued unpaid carers.
There will be a delay to the social care cap, first recommended by the Dilnot Commission in 2011, which would limit the amount people pay over their lifetime on social care. People with a muscle-wasting condition can spend hundreds of pounds per month on care, leading to huge lifetime costs. This delay to such a significant and much-needed policy is disappointing.
Research and development
Spending on research and development has been protected, which is a relief for organisations like ours that fund medical research. We currently supporting the development of ten new treatments for muscular dystrophy and have many more live research projects.
If you have questions about your finances or are worried about the rising cost of living, you can call our helpline on 0800 652 6352 (open Monday to Friday, 10am to 2pm) or email info@musculardystrophyuk.org.