There are two NHS-funded specialist AT centres in the UK:
• Nottingham City Hospital provides care for children and young people under 16. Assessments take place over one full day.
• Royal Papworth Hospital, Cambridge provides care for young people and adults age 16+. Assessments take place over two days.
Both centres offer multidisciplinary assessments and expert care to support the long-term management of AT.
The AT Society helped establish both UK specialist AT centres and continues to work with NHS teams to improve care for people with AT.
We encourage everyone with AT to attend a specialist centre after diagnosis and continue with regular appointments. These expert-led clinics provide specialist advice, monitoring and support to help maintain health and wellbeing.
Preparing ahead of time can help you get the most from your appointment.
Before you attend: Note any questions or symptoms, bring relevant reports or test results, and save any helpful photos or videos.
On the day: Consider bringing someone with you for support, allow extra time to arrive, and bring comfort items for children if needed.
To book an appointment at one of the specialist AT clinics, or to speak with a member of our Support Team, please contact:
📞 01582 760733
✉️ [email protected]
Our team will be happy to answer any questions and help you access the care and support you need.
The AT Clinic is a specialist multidisciplinary clinic where your child will be seen by a team of healthcare professionals with expertise in AT.
During the clinic, your child will have a comprehensive assessment tailored to their individual needs. Depending on your child’s age and circumstances, they may be seen by members of the medical, nursing and therapy teams.
The clinic aims to:
Review your child’s health and wellbeing
Monitor any changes since their last appointment
Discuss current concerns and answer questions
Provide advice and recommendations for ongoing care
Coordinate support with your local healthcare team
Identify opportunities to take part in AT research, where appropriate
Following the appointment, a detailed written report is usually provided within eight weeks and shared with you, your GP and relevant healthcare professionals involved in your child’s care.
Clinic Schedule
Clinics are usually held on Fridays throughout the year. Each clinic allows time for children and families to meet with several members of the specialist team, ensuring a thorough assessment and personalised care plan.
Clinic Reviews
The Nottingham team aim to recall children to the clinic every 2 years. When they reach 16, young people will be invited to attend a transition clinic in Nottingham prior to moving to the adult AT service at Royal Papworth Hospital, Cambridge. The aim of the
transition clinic is to reassure the child and their family and introduce them to few of the adult AT multi-disciplinary team. The transition clinic also provides opportunity for clinicians from both teams to discuss and review the young person’s medical history.
These highly specialised clinics are funded by NHS England.
Role of the AT Society
The AT Society works closely with both AT services. The advocacy and support team can help book family accommodation near to City Hospital, assist with transport bookings and costs, if needed. The day before clinic appointments, families are invited to meet with the AT Society support team in a private meeting room at the hotel. During this meeting, families can discuss any issues or concerns they may have regarding the upcoming clinic appointment.
The support team will also provide more information about the AT Society and explain how the charity can offer support beyond the medical setting.
Clinic Location
Child Development Centre
Nottingham City Hospital
Hucknall Road
Nottingham
NG5 1PB
The Nottingham AT clinic brings together specialists from a wide range of disciplines to provide coordinated care for children and young people with AT. The team includes experts in:
Genetics
Neurology
Respiratory Medicine
Immunology
Physiotherapy
Occupational Therapy
Speech and Language Therapy
Dietetics
Psychology
Nursing
Current team members include:
Dr Mohnish Suri – Geneticist (Clinic Director)
Tina Boyd – AT Nurse Specialist
Dr Jayesh Bhatt – Respiratory Physician
Dr Elizabeth McDermott – Immunologist
Dr Lucy Cliffe – Consultant Paediatrician
Dr Manish Prasad – Neurologist
Dr Krupa Torne – Neurologist
Dr Despoina Mandelenaki – Neurologist
Sarah Jessop – Occupational Therapist
Janet Corderoy – Physiotherapist
Kelly Hales – Speech & Language Therapist
Hannah Bailey – Dietitian
Jane Flint – Psychotherapist
Sarah Spencer – Child Respiratory Nurse Specialist
Nicola McNarry – Specialist Respiratory Physiotherapist
Children are usually reviewed in Nottingham every two years. At age 16, they are invited to a transition clinic before moving to the adult AT service in Cambridge. This clinic introduces the adult team and helps ensure a smooth transfer of care.
These highly specialised clinics are funded by NHS England.
Once a child has been diagnosed with AT, they can be referred to the specialist Nottingham clinic. Many referrals are arranged through The AT Society.
Healthcare professionals can also refer directly to:
Dr Mohnish Suri
AT Clinic Director, Clinical Genetics
Nottingham City Hospital
AT Nurse Specialist: Tina Boyd
Email: [email protected]
The Adult AT Clinic at Royal Papworth Hospital is a specialist multidisciplinary service where you will be seen by a team of healthcare professionals with expertise in Ataxia-Telangiectasia (AT).
During your visit, you will receive a comprehensive assessment tailored to your individual needs. Before you arrive, please fill out this information Hospital Passport.
The clinic aims to improve the quality and length of life for adults with AT. It provides a full multidisciplinary medical assessment and offers information and advice based on the needs of each individual.
Following the clinic, a detailed written report is produced with recommendations for future care and shared with the person with AT, their GP and local healthcare team. The service also supports research into AT and helps assess the factors that contribute to chest and respiratory problems in adults with the condition.
During a subsequent visit, additional neurological investigations may be offered, including an MRI brain scan, nerve conduction studies and a review with a Clinical Geneticist.
If you have any questions about these investigations, please speak to the neurologist or Natasha before or during your appointment.
Following your appointment, a detailed written report is usually provided within eight weeks and shared with you, your GP and the healthcare professionals involved in your care.
When you attend the specialist clinic at Royal Papworth Hospital, you will be admitted as an inpatient and stay in a private room with an en-suite bathroom and flat-screen TV. A pull-out bed is available in the room for a relative or carer.
If additional family members or carers require accommodation, the AT Society can arrange nearby bed and breakfast accommodation and help coordinate transport if needed.
Admissions take place on Sunday evening. During your stay, you will be seen by a range of specialist doctors and therapists before being discharged on Tuesday lunchtime.
Appointments are arranged throughout the year to meet individual needs.
Most people return to Royal Papworth Hospital every one to two years for a review appointment.
These highly specialised clinics are funded by NHS England.
The AT Society works closely with both specialist AT services and can provide practical and emotional support before, during and after appointments.
The Support Team can help with accommodation bookings, transport arrangements, advice about travel cost support, and answering questions about clinic appointments.
The day before clinic appointments, families are invited to meet members of the AT Society Support Team in a private meeting room at the hotel. This informal meeting provides an opportunity to ask questions, discuss any concerns and find out more about the support available.
Adult AT Services
Respiratory Support Sleep Centre
Royal Papworth Hospital
Papworth Road
Cambridge Biomedical Campus
Cambridge
CB2 0AY
The Papworth clinic brings together specialists from a wide range of disciplines to provide coordinated care for adults and young people with AT. The team includes experts in:
Genetics
Neurology
Respiratory Medicine
Immunology
Physiotherapy
Occupational Therapy
Speech and Language Therapy
Dietetics
Psychology
Nursing
Current team members include:
• Natasha Everett – AT Clinic Coordinator(RSSC Multidisciplinary Team Coordinator)
• Dr Nick Oscroft – Respiratory Consultant – Clinical Lead
• Corinne Gaston – Speech & Language Therapist
• Penny Martin – Social Worker
• Jose Barros Andrade – Social Worker
• Geneticist – Professor Marc Tischkowitz (available for specialist consultations when required)
• Clare Witcombe – Dietitian
• Dr Clare Bolton – Neurologist
• Nikki Gilbert – Physiotherapist
• Occupational Therapist – Amy Chadwick
Chest and respiratory problems are a significant cause of ill health in adults with Ataxia-Telangiectasia (AT). Research has shown that a number of factors can contribute to these difficulties, including swallowing problems, breathing issues, reduced muscle control, recurrent infections, and a weakened immune system.
Royal Papworth Hospital has been identified as the UK’s specialist centre for adults with AT because of its expertise in these areas. The clinic provides comprehensive medical assessments for people aged 16 and over. Female patients aged 25 and above will also be offered MRI breast screening.
As part of the assessment process, some patients may be recommended investigations such as a high-resolution CT chest scan and video fluoroscopy. These tests play an important role in helping specialists understand and manage chest and swallowing problems, which are among the most serious health concerns associated with AT.
AT is known to be associated with increased sensitivity to radiation, particularly at the much higher doses used for radiotherapy rather than diagnostic tests. Following discussions between international AT experts, clinicians at the Nottingham AT Clinic, Professor Malcolm Taylor (University of Birmingham) and the AT Society, a consensus was reached that high-resolution CT chest scans and video fluoroscopy are low-risk procedures and are essential components of clinical assessment in AT.
All scans and investigations are reviewed by experienced radiologists with specialist expertise in chest conditions. The clinical team understands that patients and families may have concerns about radiation exposure and will be happy to discuss these. No investigation will be carried out without your informed consent.
Young people with AT, AT-like conditions (ATLD), AOA1 or AOA2 who are currently attending the children’s specialist AT service in Nottingham will transition to the adult AT service at 16 years of age.
Adults aged 16 and over with AT, AT-like conditions, AOA1 or AOA2 should be referred to the service by their local GP or hospital consultant. If required, the AT Society can contact your GP or consultant to help start the referral process.
Referrals should be sent to:
Dr Nick Oscroft
Adult AT Services, RSSC
Royal Papworth Hospital
Papworth Road
Cambridge Biomedical Campus
Cambridge
CB2 0AY
For referral enquiries, you can also contact:
Natasha Everett
RSSC MDT Coordinator
📞 01223 639452
✉️ [email protected]
If you have any questions about the service or would like support with arranging an appointment, please contact the AT Society Support Team:
Kay Atkins (Head of Services)
Anne Murray (Family Support Manager)
📞 01582 760733
✉️ [email protected]
You are also welcome to contact Natasha Everett directly using the details above.
