Government consultations are an opportunity for organisations and the public to share evidence, experiences and recommendations before decisions are made. For Lupus UK, they are an important way to ensure that the experiences of people living with lupus are included in policy development.
This year, we recruited a Policy Officer to join the Lupus UK team, so that we can do more work to make change in systems like the NHS and government policy across all four nations of the UK. Our Policy Officer will be doing lots of different kinds of work, and one thing is responding to more consultations and having the needs of people with lupus highlighted in more places.
These are some of the consultations we’ve responded to recently and what we told them:
Proposed “Rare Disease Therapies Regulatory Framework” – MHRA consultation (UK-wide)
The Medicines and Healthcare products Regulatory Agency (MHRA) is a government organisation which assesses evidence to make sure medicines are safe, including new medicines being developed and medicines which have already been approved. The MHRA recently consulted on a possible new framework for developing and approving treatments for rare diseases. Lupus UK responded, highlighting the experiences and needs of people living with lupus.
Lupus is not classed as a rare disease under the proposed framework, as “rare disease” in this context is a condition that affects a much smaller number of people. But some forms of lupus including lupus nephritis, childhood-onset lupus, and treatment-resistant lupus face similar challenges when developing treatments and getting clinical evidence to show if they are effective.
We welcomed the proposals but said conditions that the framework includes should consider factors beyond how many people are affected by a condition, including severity, unmet need, and the challenges of getting evidence of effectiveness. We also highlighted the importance of involving people with lived experience in medicine development and ensuring that plans for faster approval also becomes faster access to treatments through the NHS.
The MHRA is reviewing responses and aims to publish its response in early autumn. We will continue to advocate for the lupus community and better access to safe and effective treatments.
Priorities for the Seventh Senedd – Health and Social Care Committee Consultation (Wales)
Lupus UK responded to the Welsh Government’s consultation on health and social care priorities for the next Senedd.
We broadly welcomed priorities including improving access to care, strengthening community services and tackling health inequalities. We also highlighted the particular challenges faced by people living such as lupus, who may require support from multiple services.
Our response called for earlier diagnosis, timely access to specialist care, and better coordination between services. We also emphasised the importance of supporting people to live well with lupus, maintain their independence, and have a meaningful role in shaping the services they use.
We want to see a health and care system that works around the needs of people with lupus and enables them to live full and active lives.
RAIRDA submission to the Timms Review on PIP (England, Wales, N. Ireland)
As a member of the Rare Autoimmune Rheumatic Disease Alliance (RAIRDA), Lupus UK contributed to RAIRDA’s response to the Timms Review of Personal Independence Payment (PIP). This helped ensure that the experiences of people living with lupus were represented.
The submission highlighted the importance of PIP in supporting people with the additional costs associated with long-term conditions. It also highlighted how current assessments can fail to capture the fluctuating, invisible and complex nature of conditions such as lupus. Symptoms including fatigue and brain fog can have a significant impact on daily life without being present during a single assessment.
The submission called for a fairer approach that better recognises fluctuating conditions, makes greater use of existing medical evidence and avoids unnecessary reassessments for people with lifelong conditions. It also emphasised the importance of supporting people who are able to work and involving people with lived experience in shaping future changes.
The Timms Review is expected to report in autumn 2026. Lupus UK will continue to work through RAIRDA to ensure the experiences of people living with lupus inform the review as it progresses.
SEND Reform – Education Otherwise Than at School Consultation (England)
Lupus UK responded to the UK Government’s consultation on reforms to support children and young people with special educational needs and disabilities (SEND), including education otherwise than at school (EOTAS).
We highlighted the particular challenges faced by children and young people with lupus, whose ability to attend and engage with education can fluctuate because of fatigue, pain, cognitive difficulties, treatment, hospital appointments and disease flares.
Our response called for early support, before attendance difficulties become long-term, and for EOTAS support to be flexible, individualised and focused on meaningful education and interaction. We also highlighted the need for better coordination between schools, local authorities, families and health professionals, including clear responsibility for coordinating support.
We want to see an education system that responds to the changing needs of children and young people with lupus, ensuring they can maintain their learning, wellbeing, social connections and longer-term participation in education.
Wider Policy and Public Affairs Activity
Northern Ireland – Neighbourhood Model of Health and Wellbeing
In August our Policy and Communications Officer and Community Services Co-ordinator attended the From Policy to Practice: Neighbourhood Model of Health & Wellbeing event, hosted by the Northern Ireland Health Collective.
The event brought together voluntary and community sector organisations to discuss the development of Integrated Neighbourhood Teams in Northern Ireland and how the voluntary and community sector can help shape local health and care services.
A key takeaway was the importance of ensuring that people with lived experience and specialist charities have a meaningful voice in shaping local services. We will continue to engage in these discussions and represent the needs of people living with lupus as Integrated Neighbourhood Teams in Northern Ireland progress.
Scotland – Improving Care for People Living with Inflammatory Conditions
Lupus UK helped shape a new report, led by the National Rheumatoid Arthritis Society (NRAS) in partnership with Lupus UK and other patient organisations, examining the experiences of more than 1,250 people living with immune-mediated inflammatory diseases (IMIDs) across Scotland.
The report highlights ongoing challenges with diagnosis, access to specialist care and support for self-management. Fifty-five per cent of respondents needed three or more GP appointments before being referred to a specialist, while only 25% of people diagnosed with an IMID in the last five years felt confident managing their condition. Among people with lupus, just 19% felt very or completely confident self-managing their condition.
These findings strengthen the case for earlier diagnosis, better access to specialist and coordinated care, and improved support for self-management. We are now working with partner organisations to explore how the findings can be used to influence policy and improve care for people living with IMIDs across Scotland.