NICE publishes Quality Standard for rare disease
NICE has published a Quality Standard for Rare Disease which sets out what high-quality sustainable care, treatment, and management should look like for rare diseases. We hope that this will help improve services, care, and outcomes for people with lupus and those going through diagnosis.
Lupus UK submitted feedback to the consultation, and we will use the Standard as part of our work advocating for high quality care and services for people with lupus.
You can find the Rare Disease Quality Standard on the NICE website here.
What is a Quality Standard?
A Quality Standard is a set of statements which clearly say what high-quality, sustainable care, treatment, and management looks like for rare diseases. It also includes information on how to measure progress or how well the Statements are being met. It is not a legal document, so they do not have to be used or followed, but in practice are used by a range of organisations and regulators to help identify and measure good quality care, identify gaps in services, and develop new services. People living with health conditions can also use them to understand what good quality care should look like for their condition.
You can find out more about Quality Standards on the NICE website.
What does the Quality Standard for Rare Disease say?
The Standard includes eight statements about different aspects of care, like diagnosis and access to information. Each statement includes ways of measuring how well a service is meeting the statement, for example how many people in a service have a named healthcare professional who co-ordinates their care. This means that services can measure their progress in how well they are delivering care, and helps the NHS to design new services.
You can read all the statements on the NICE website.
Do Quality Standards apply to the whole of the UK?
Quality Standards are developed by NICE and apply to health and social care in England and Wales. The Scottish government and Northern Ireland Executive decides how they apply to Scotland and Northern Ireland.
Quality Standards, such as these for rare diseases, are designed to be used in any nation of the UK to help them improve care and treatment for people with rare diseases. The team that led the development of the Rare Disease Standards included people from all four nations of the UK.
What difference will Quality Standards make to people with lupus?
The Quality Standard is for rare diseases in general, so they do not include Statements specific to lupus, like regular monitoring for lupus nephritis. However, the Statements are very relevant to lupus and people going through the process of diagnosis. For example, there are Statements about people having a named healthcare professional who co-ordinates their care, and people having equal access to recommended treatments no matter where they live. These are also very important for people with lupus.
Quality Standards may help to improve care and treatment for rare diseases, including lupus. They do this by setting out clearly what high-quality care and treatment looks like, which makes it easier to measure whether services are providing safe and effective services, to design services, or to see where there are gaps in care or services, for example. As they are developed collaboratively with patients and patient representatives, it can also help to ensure that the voices of those affected by rare diseases are considered at a policy-making level.
The Quality Standard won’t lead to any changes to services immediately, but can help make improvements over time. Having a Standard can help people to understand and be more aware of the needs of people with rare disease straight away.
How did Lupus UK help the needs of people with lupus be heard and included?
Lupus UK took part in the consultation for the Standard. Lupus UK responded to the draft statements with comments about aspects particularly important to the care of lupus, while acknowledging that the Standard needed to apply to all rare diseases.
Lupus UK is also a member of the Rare Autoimmune Rheumatic Disease Alliance (RAIRDA). RAIRDA was very involved in how the Rare Disease Quality Standard was developed, as the co-chair of RAIRDA also chaired the project group and RAIRDA co-ordinated the project. This means the needs of people with rare autoimmune conditions like lupus had a strong voice in the process.
NICE will include a summary of the consultation responses on the website soon. When it is available, you will be able to read them on this website.
What will Lupus UK do with the Quality Standard?
This Quality Standard will help us to advocate for high quality care and services for people with lupus. The new BSR guidelines for lupus will also be coming out this year, and those guidelines include a section on what good care for people with lupus should look like. Having both the Quality Standard for Rare Disease and the new BSR guidelines will give us lots of good evidence about what good care for lupus should look like. This helps us have a stronger voice when we advocate for the community’s needs.
RAIRDA will also be using the Standard in our work to improve the care and experiences of people with rare autoimmune rheumatic conditions like lupus, Raynaud’s, and vasculitis. There are lots of common experiences between people with these conditions, and working together helps us to have a more powerful voice.