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PAPWORTH CLINIC
The A-T clinic at Papworth Hospital www.papworthhospital.nhs.uk/content.php?/about/ is for people with A-T aged 16 and over.
The clinic offers a standardised respiratory, immunological, neurological assessment to complement the service at the Nottingham Clinic.
Two visits to Papworth are required for an initial complete consultation. The first visit lasts 2-3 days as an NHS in-patient, while the second visit, about 6 weeks later, includes an overnight stay followed by a consultation where feedback and advice on the results is offered to the patient and his/her their family or carer.
- Background
- Respiratory Support and Sleep Centre (RSSC)
- Respiratory Infection, Inflammation, and Immunity (RIII) Service
- The Multi-Disciplinary Team
- Referral
Read about Rupert’s experience of attending the clinic
Background
Chest problems in A-T are a major cause of ill health and premature death. Several studies indicate that a number of factors may contribute to chest problems in A-T, including difficulties in swallowing, breathing, and neuromuscular control, infections, and a deficient or poorly regulated immune system.
Papworth Hospital, the UK’s largest specialist cardiothoracic hospital and the country’s main heart and lung transplant centre, was identified as the facility with the right blend of expertise and dedication required to assess these factors and offer life-enhancing clinical advice.
Respiratory Support and Sleep Centre (RSSC)
This is a specialist unit within Papworth having its own purpose-built accommodation. The RSSC treats large numbers of patients with sleep disorders but also receives referrals from all over the country of patients whose conditions have adversely impacted their respiratory systems. Many of these patients have chronic disorders of the nervous system which controls the pattern of breathing or some impairment of the breathing muscles themselves. RSSC staff are used to dealing with patients who have become disabled as a result of their complex neurological disorders and make full allowance for this in the care they offer at the Centre. Their aim is to personalise the care that is required and to pay attention to each individual’s needs; they are committed to providing whatever special assistance is needed. A-T patients are accommodated in a side room which has a roll-away bed for a family member or carer.
Respiratory Infection, Inflammation, and Immunity (RIII) Service
The RIII attracts national referrals because of its expertise in the management of respiratory and immune problems. A-T patients are seen in the RIII clinics for immunological assessment, and to identify opportunities to support the immune system with the optimal use of standard vaccines, antibiotics, anti-virals, and immunoglobulin replacement as appropriate.
The Multi-Disciplinary Team
Both the RSSC and RIII work in multi-disciplinary teams with excellent support from many other departments. The programme includes assessment of swallowing/reflux by speech and language therapists by a Sips test and Video Fluoroscopy. Patients are also offered functional assessments with a Respiratory Physiotherapist, Occupational Therapist and Social Worker.
Radiation Risks
A high-resolution CT chest scan and video fluoroscopy are standard investigations for assessment of chest problems, a major cause of ill health and premature death in A-T. We also know that A-T is a disorder associated with increased sensitivity to radiation at the high levels associated with radiotherapy. Discussions at the international A-T Conference in October 2004, at the Nottingham Clinic, with Professor Malcolm Taylor and with the A-T Society have produced a consensus that a high-resolution, low dose, CT chest scan and video fluoroscopy are low risk and essential to clinical assessment in A-T. The CT scan and video fluoroscopy will be assessed by radiologists who have considerable expertise in chest problems. The team is sensitive to concerns about radiation risks, and is happy to discuss this. No examinations will be carried out without the patient’s consent.
Referral
If you would like to attend the Clinic, or want to know more, contact contact Kay Atkins at the A-T Society.
Or you can ask your GP to make a referral on your behalf, to:
Dr Exley (Consultant Immunologist) & Dr Shneerson (Consultant Chest Physician),
Adult A-T Services,
Papworth Hospital NHS Foundation Trust,
Papworth Everard,
Cambridge
CB3 8RE.
Read about Rupert’s experience of attending the clinic
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