Asked by: Lord Hay of Ballyore (Democratic Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what provisions are in place to support the families and caregivers of individuals with rare diseases.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
Each year since 2021, we have published an England Rare Diseases Action Plan. On 29 February 2024, we published the third England Rare Diseases Action Plan. In this plan we recognised that significant challenges exist with access to mental health and psychological support for people living with rare conditions, as well as their families and carers. During this year we have taken steps to further understand the challenges faced through a workshop, and have begun to address these needs by developing resources to better equip the workforce to provide support.
The enormous contribution of unpaid carers, including those caring for individuals with rare diseases, is reflected throughout the Next Steps to Put People at the Heart of Care, published in April 2023. Furthermore, the Better Care Fund in 2023/24 includes £327 million for carers support, including short breaks and respite services for carers. This also funds advice and support to carers, and a small number of additional local authority duties. The Accelerating Reform Fund also provides support for unpaid carers. The Government is developing a new survey of unpaid carers which will capture the wide range of experiences, circumstances, and needs of unpaid carers across England. Through the National Institute for Health and Care Research, an evaluation of the support provided to unpaid carers funded through the Better Care Fund has been commissioned, which will improve the understanding of what support works best for unpaid carers.
Asked by: Lord Hay of Ballyore (Democratic Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what steps they are taking to ensure equitable access to specialised care and support for patients with rare diseases across England.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
In January 2021, the Government published the UK Rare Diseases Framework, providing a national vision for how to improve the lives of those living with rare diseases. The framework lists four priorities, collaboratively developed with the rare disease community, which are: helping patients get a final diagnosis faster; increasing awareness of rare diseases among healthcare professionals; better coordination of care; and improving access to specialist care, treatment, and drugs. The principles of the UK Rare Diseases Framework commit the four nations to ensuring that any impacts on health inequalities are considered when developing action plans.
Each year since 2021 we have published an England Rare Diseases Action Plan, with health equity highlighted as a focus area. On 29 February 2024 we published the third England Rare Diseases Action Plan, which is working to address these priorities. Several actions have been committed to in this year and previous year’s action plans, that relate to equitable access to specialised care and support for patients with rare diseases.
Asked by: Lord Hay of Ballyore (Democratic Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what steps they are taking to support research and development of treatments for patients with haemochromatosis.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Institute for Health and Care Research is currently directly funding one ongoing study on haemochromatosis, and over the last five years, has funded infrastructure to support seven others.
Asked by: Lord Hay of Ballyore (Democratic Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what steps they are taking to increase funding and support for Alzheimer's research to accelerate the development of effective treatments and improve early diagnosis techniques.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
The Government is strongly committed to supporting research into dementia and has committed to double funding for dementia research, to £160 million per year, by the end of 2024/25. This will span all areas of research, including diagnosis and treatment of dementia, and more specifically Alzheimer’s disease.
The Government has allocated up to £120 million to the Dame Barbara Windsor Dementia Mission, which aims to speed up the development of new treatments through innovations in biomarkers, clinical trials, and implementation.
Alongside the mission, the Department, via the National Institute for Health and Care Research (NIHR), is funding a range of research to accelerate the development of effective treatments and to improve early diagnosis techniques. This includes investing almost £50 million into the NIHR’s Dementia Translational Research Collaboration Trials Network. This will expand the United Kingdom’s early phase clinical trial capabilities in dementia, speeding up the development of new treatments, and funding to the Blood Biomarker Challenge which could make the case for the use of a blood test in the National Health Service, to support diagnosis of dementia, including Alzheimer’s disease.
Asked by: Lord Hay of Ballyore (Democratic Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what steps they are taking to improve early diagnosis and intervention for children with autism spectrum disorders.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
We recognise timely identification of autism can play an important role in enabling children and young people to get appropriate support, which is crucial in preventing escalation of needs. We expect integrated care boards (ICBs) to have due regard to National Institute for Health and Care Excellence (NICE) guidelines on autism when commissioning services. It is the responsibility of ICBs to make available appropriate provision to meet the health and care needs of their local population in line with these NICE guidelines, including in relation to autism assessment. While we want every area to meet NICE guidance, we recognise that this is not happening everywhere.
On 5 April 2023, NHS England published a national framework and operational guidance for autism assessment services in an online-only format. This guidance will help the National Health Service improve autism assessment services and improve the experience for people referred to an autism assessment service. This includes guidance to local areas on how to manage referrals and the support that should be available whilst people are waiting for an assessment and after.
In 2023/2024, £4.2 million of funding is available across England to improve services for autistic children and young people, including autism assessment services. We are also working in partnership with the Department for Education and NHS England on ‘Partnerships for Inclusion of Neurodiversity in School’ (PINS), with £13 million of funding to test ideas that will improve access to specialist support for neurodiverse children in mainstream primary schools.
Each ICB in England is expected to have an Executive Lead for learning disability and autism, supporting the Board in planning to meet the needs of its local population of people with a learning disability and autistic people, including in relation to appropriate autism assessment pathways. NHS England has published guidance on these roles.
Asked by: Lord Hay of Ballyore (Democratic Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what measures are in place to train healthcare professionals in understanding and supporting the specific medical needs of individuals with autism.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
There are several measures being put in place to train healthcare professionals in understanding and supporting the needs of autistic people.
From 1 July 2022, the Health and Care Act 2022 requires providers registered with the Care Quality Commission to ensure their staff receive specific training on learning disability and autism appropriate to their role. We are rolling out the Oliver McGowan Mandatory Training on Learning Disability and Autism to support this. This training will help to ensure that staff have the right skills and knowledge to provide safe and compassionate care, including how to provide reasonable adjustments, for autistic people. Over 1.4 million people have completed the first part of Oliver’s Training, an e-learning package.
NHS England has commissioned the Royal College of Psychiatrists to deliver the National Autism Training Programme for Psychiatrists in response to the need and demand for better autism training from within the profession. The training is co-produced and co-delivered with autistic people and offers a short foundation training course for psychiatrists working across a variety of settings, and a longer, more enhanced development course, aimed at psychiatrists and higher trainees who are seeking to increase their specialist knowledge and skills in autism. The provision of this training will help reduce diagnostic overshadowing, play a significant role in preventing unnecessary admissions to mental health hospitals for autistic people and improve autism appropriate care. The ambition is that this may contribute to reducing the number of inappropriate admissions, interventions such as seclusion and segregation along with the length of stay for those who need hospital care.
Asked by: Lord Hay of Ballyore (Democratic Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what steps they are taking to address the shortage of NHS staff in rural and understaffed areas.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
The Government recognises the importance of expanding the National Health Service workforce, particularly in parts of the country which are understaffed, including rural areas. The NHS Long Term Workforce Plan (LTWP) commits to doubling the number of medical school places, with new medical schools and additional places in geographical areas with the greatest staff shortfalls. Further medical expansion will build on the impact of five new medical schools that have already opened in historically hard-to-recruit rural and coastal locations in Tyne and Wear, West Lancashire, Essex, Lincolnshire, and Kent.
The LTWP also sets out an aim to further adjust the distribution of postgraduate specialty training places, so that more medical students carry out their postgraduate training in parts of the country with the greatest shortages. Doctors are more likely to settle and practice in the areas they train. Therefore, expansion of places will help to address the need for more staff in these areas.
Asked by: Lord Hay of Ballyore (Democratic Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what steps they are taking to improve mental health services and reduce waiting times for those seeking treatment.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
We are providing record levels of investment and increasing the mental health workforce to expand and transform National Health Service mental health services, to expand access and reduce waiting times. Between 2018/19 and 2023/24, NHS spending on mental health has increased by £4.6 billion in cash terms, as compared to the target of £3.4 billion in cash terms set out at the time of the NHS Long Term Plan. The plan committed to grow the mental health workforce by an additional 27,000 staff between 2019/20 and 2023/24. We are making positive progress, delivering two-thirds of this, approximately 17,000, by September 2023, with further significant growth expected by the end of this financial year.
The NHS is also working towards implementing five new waiting time measures for people requiring mental healthcare in both accident and emergency and in the community, for both adults, and children and young people. This includes working towards improving the quality of data that we have on waiting times for people requiring mental healthcare in both accident and emergency and in the community. NHS England began publishing this new data in 2023 to improve transparency and drive local accountability.
Asked by: Lord Hay of Ballyore (Democratic Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what steps they are taking to ensure equitable access to cancer treatment and care across different regions of the UK; and what steps they are taking to improve cancer survival rates.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
Reducing inequalities and variation in cancer treatment is a priority for this Government as is increasing early cancer diagnosis, as this is a key contributor to reducing cancer health inequalities. People in deprived areas are at greater risk of contracting cancer, more likely to have a cancer diagnosed at a later stage and suffer from higher cancer death rates and poorer survival. Survival rates have been improving for almost all cancers and across all demographics, with 74.6% people surviving a year after diagnosis, up from 65.6% in 2005, and 55.7% surviving five years, up from 47.9% in 2005.
The National Health Service has rolled out Targeted Lung Health Checks, prioritising more deprived areas, so that people in the most deprived quintile are now more likely to be diagnosed with lung cancer at an early stage, namely stage one or two, than those in the least deprived quintile, giving them a much greater chance of survival.
On 14 August 2023, the Government published a strategic framework for the Major Conditions Strategy to consider the six conditions, including cancer, that contribute most to morbidity and mortality across the population in England, including cancer. The Major Conditions Strategy will apply a geographical lens to each condition to address regional disparities in health outcomes, supporting the levelling up mission to narrow the gap in healthy life expectancy by 2030.
Asked by: Lord Hay of Ballyore (Democratic Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what steps they are taking to improve treatment and care for patients with Alzheimer's.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
We want a society where every person with dementia, their families and carers, receive high quality, compassionate care, from diagnosis through to end of life. To improve care for patients with dementia, including those with Alzheimer’s disease, NHS England's RightCare team is refreshing the RightCare Dementia Scenario. The scenario works through the dementia well pathway journey from diagnosing well through to dying well, detailing optimal and sub optimal approaches, with associated costings for each. The RightCare team is developing a dementia model pathway based on data for each component of the dementia well pathway to provide a high-level view of what dementia care activity looks like for local areas and will support targeted support where appropriate.
There are also several potential new disease modifying treatments for Alzheimer’s disease in development. The Medicines and Healthcare products Regulatory Agency, the National Institute for Health and Care Excellence (NICE), NHS England and the Department are working closely to ensure that arrangements are in place to support the adoption of any new licensed and NICE recommended treatment for dementia as soon as possible.