Continuity of Care Following Changes to Specialist Rett Services
Reverse Rett recognises the significant contribution the CIPP Rett Centre has made to the care of people living with Rett syndrome over many years. The Centre, based at King’s College Hospital has provided highly specialised expertise for many families and has played an important role in improving understanding and management of Rett syndrome across the UK.
We appreciate that changes to specialist NHS services can be unsettling for families and professionals alike. As patients begin receiving discharge notifications, our priority is to help families understand how continuity of care can be maintained and what practical steps they can take to ensure ongoing clinical support.
Our Position
A change in specialist service provision should not result in people living with Rett syndrome losing access to safe, coordinated or appropriate healthcare.
Many individuals with Rett syndrome receive medications and management plans that were originally recommended by specialist clinicians but are routinely prescribed by their GP or local NHS team. The closure of the originating specialist service should not, in itself, lead to established treatments being withdrawn or to uncertainty regarding ongoing care.
Where dedicated specialist oversight is no longer available, families should receive clear information about how future care will be coordinated. In many cases, the GP will continue to prescribe established medications while coordinating referrals to the most appropriate NHS specialists should new clinical issues arise.
Families should have clarity regarding:
- Which clinician will coordinate ongoing care (often their GP).
- Which NHS specialists remain involved in their care (for example paediatricians, neurologists, psychiatrists, respiratory physicians, gastroenterologists, orthopaedic teams or Learning Disability services).
- Who should be contacted if symptoms change or treatment requires review.
- How referrals back into specialist services can be made if further expert advice becomes necessary.
- How transition from paediatric to adult services will be coordinated where relevant.
Why Specialist Knowledge Still Matters
Rett syndrome is a rare, lifelong neurological disorder affecting multiple body systems. Clinical management frequently requires consideration of complex interactions between neurological, respiratory, gastrointestinal, musculoskeletal, cardiac, behavioural and autonomic symptoms.
Many individuals live with complex combinations of epilepsy, breathing dysregulation, gastrointestinal dysfunction, scoliosis, anxiety, movement disorders and communication impairment. Treatments are often prescribed to manage symptoms across these interconnected systems, meaning decisions about ongoing care require an understanding of the wider clinical picture.
Although ongoing care may be delivered locally, access to specialist knowledge remains important when complex clinical decisions need to be made.
Established Treatments
Many people living with Rett syndrome receive medications following specialist assessment to help manage symptoms such as:
- breathing abnormalities
- autonomic dysfunction
- anxiety
- sleep disturbance
- behavioural difficulties
- gastrointestinal symptoms
- movement disorders
- epilepsy and associated neurological symptoms.
Where a treatment is providing clear clinical benefit, decisions regarding continuation, adjustment or discontinuation should always be based on an individual clinical assessment by an appropriately qualified NHS clinician—not simply because the service that originally recommended the medication has changed.
In many cases, ongoing prescribing arrangements will continue through the individual’s GP as part of established NHS prescribing arrangements.
Shared Responsibility Across the NHS
Reverse Rett recognises that most medications used in Rett syndrome are already prescribed within primary care following recommendations from specialist clinicians.
We also recognise that GPs should not be expected to manage a highly specialised neurodevelopmental condition in isolation.
Where new clinical concerns arise, the GP should have clear referral pathways to the most appropriate NHS specialist service. Depending on an individual’s age and clinical circumstances, this may include paediatric services, adult neurology, psychiatry, respiratory medicine, gastroenterology, Learning Disability services or other appropriately commissioned NHS services.
For young people under the age of 25, local NHS consultants—including paediatricians, neurologists, psychiatrists and Learning Disability specialists—may still be able to refer to the CIPP Rare Disease service where this is clinically appropriate. Families who feel additional specialist advice is required should discuss this with their existing NHS clinician.
Supporting Families During Transition
Changes to specialist services can feel daunting, particularly for families who have built longstanding relationships with a specialist team.
Transition should therefore be planned and coordinated across the individual’s existing care network. This may include:
- the GP
- hospital consultants already involved in care
- community paediatric or adult services
- Learning Disability services
- therapists
- residential providers
- social care professionals
- community nursing teams.
These professionals already know the individual and can help ensure continuity of care while new clinical arrangements become established.
Discharge arrangements should clearly identify:
- how ongoing prescriptions will continue;
- who will be responsible for reviewing medications when clinically required;
- how referrals can be made if specialist review becomes necessary in the future;
- how young people moving into adult services will be supported;
- who families should contact if new clinical concerns arise.
Practical Steps for Families
If you receive a discharge letter following changes to specialist services, we recommend that you:
- Keep a copy of your discharge summary and care plan.
- Contact your GP to confirm that existing prescriptions will continue as expected.
- Ask who will coordinate your ongoing care and future reviews.
- Ensure that other NHS specialists involved in your care have received relevant clinical information where appropriate.
- Seek medical review promptly if symptoms change or new concerns develop.
- Discuss with your existing NHS clinician whether referral to another specialist service is appropriate if additional expertise is needed.
- If your family member is under 25 years of age and specialist advice is required, ask your NHS consultant whether referral to the CIPP Rare Disease service remains appropriate.
Reverse Rett’s Commitment
Reverse Rett remains committed to working collaboratively with NHS organisations, clinicians and families to support continuity of care for everyone living with Rett syndrome.
We recognise that services will continue to evolve. Our role is to advocate for clear clinical pathways, equitable access to specialist expertise where needed and coordinated care throughout every stage of life.
We also encourage families to let us know if they experience significant difficulties accessing appropriate NHS care during this period of transition. Understanding these experiences will help us continue to advocate for improvements on behalf of the Rett community.
Scope of this Statement
This position statement has been produced to support families following changes to specialist Rett syndrome services.
It does not constitute clinical guidance and does not recommend the use of any specific medication or treatment. Decisions regarding individual care should always be made by appropriately qualified healthcare professionals in partnership with patients and their families.
Reverse Rett’s position is that changes to service provision should never compromise access to safe, coordinated and clinically appropriate care for people living with Rett syndrome.
