Ongoing care for a child with A-T

Attendance at the national specialist centre

It is essential that children with A-T attend the national specialist centre at Nottingham for an initial assessment by the multidisciplinary team. This assessment will provide information which will help the local team support the child with A-T and their family.

After an initial assessment at the national A-T centre, it is strongly recommended that the child continues to make regular visits to the centre. You will be invited to make an appointment every two to three years. More details about visiting the centre can be found here.

Following each visit a letter detailing the findings and any recommendations from each specialty will be sent to the referring physician, the local team and the family. Where it is felt necessary for urgent treatment to take place, the clinic will also prescribe or make referrals as necessary.

 Local care plan

It is vital to establish appropriate local care, to ensure that the child is monitored and their needs met between visits to the specialist centre. Paragraph 5.8 of the UK Strategy for Rare Diseases states that every patient “should have an overall care plan to manage co-ordination of care between health and social services” and we strongly endorse this. Ideally a formal arrangement should be established, with regular “team around the child” meetings, involving representatives from health, education and social care. We also recommend that each child has a local named key worker, and a local named lead professional, as set out in paragraph 5.9 of the UK Strategy for Rare Diseases.

People with A-T will need support at different stages of the disease from a range of different health professionals, but generally need a local community paediatrician, a local paediatric neurodisability specialist or paediatric neurologist and a local paediatric respiratory specialist, and their teams. Some children will also require an immunologist. The A-T clinic will then be able to liaise with the local team more effectively.

Clinical guidance

In October 2014 the A-T Society published the first ever formal guidance document on the clinical care of children with AT. The clinical guidance document Ataxia-telangiectasia in children sets out in detail the assessments and the care that a child with A-T should recieve.

Because A-T is such a complex condition, children need to be seen by a wide range of different experts. However, because it is so rare, very few  will have any previous experience of treating someone with A-T. For this reason, and because in different areas, care is organised differently, there has up to now been great variation in who people see between visits to Nottingham and how often.

We hope that over time the clinical guidance document will change this. However, it was only published recently and we recognise that it will take time to change things. We will be sending out a copy of the document to those professionals we know to be treating someone with A-T. However, we recommend that you ask if they have seen the guidance, and if not, that you give them a copy or give us their contact details to send one.

Detailed guidance can be found in the guidance document itself, however, we strongly recommend the following form part of the care package:

  • Respiratory care: A respiratory review at least every three months, and more frequently if the child is unstable.
  • Neurology:  A paediatric neurodisability review at least every 6 months, and more frequently if the child is unstable. A local paediatric neurology review at least every year, or more often if support is needed by the neurodisability paediatrician.
  • Immunology: In those children where recurrent infections are related to immune deficiency, local immunologist input is recommended. This is essential for children who may need to commence immunoglobulin replacement         therapy.
  • SLT and diet: Regular assessments by a speech and language team, and also dietetic review.
  • Physiotherapy: Regular assessment and review.
  • Occupational therapy: Regular assessment and review (particularly when symptoms change)

For infomation on Vaccines download a PDF of our Vaccines Fact Sheet. 

If you have any concerns about the care that your child is receiving, please contact Kay or Anne in the office. 

 

 

 

 

The garden of the A-T clinic in Nottingham

The garden of the A-T clinic at the City Hospital, Nottingham

 

  

Team around the child

Team around the child meeting

 

 

 

 

Cover of clinical guidance document

The clinical guidance document

 

Vaccine Fact Sheet

 Vaccines Fact Sheet