Childhood Disability Research Priority Setting Partnership

Have you ever thought of a way in which we could improve the health and/or wellbeing of children or young people affected by disability?

The aim of the Childhood Disability Research Priority Setting Partnership is to identify the unanswered questions about the effectiveness of ‘interventions’ for children and young people affected by ‘neurodisability’. The project is keen to include the perspectives of young people, families and health professionals.

Interventions can take many forms; they include mainstream and alternative treatments and therapies, social interventions, changes to the environment, and any other ways we could change something to make a difference.

Neurodisability describes a group of congenital or acquired long-term conditions that are attributed to impairment of the brain and or neuromuscular system and create functional limitations. A specific diagnosis may or may not be identified. Conditions may vary over time, occur alone or in combination and include a broad range of severity and complexity. The impact may include disturbances of movement, cognition, hearing and vision, communication, emotion and behaviour.

This is your chance to make your views known.

To help you understand what we mean, here are some examples of 'unanswered questions' from priority setting partnerships that have run for people affected by other health conditions:  Are breathing exercises helpful in controlling asthma?

 What is the evidence for gargling aspirin to relieve a sore throat?

 In individuals with cleft lip/palate when is the most effective age to begin speech therapy?

 Is monochloroacetic acid more effective for the treatment of warts than liquid nitrogen? By participating in this survey you are agreeing to allow us to publish the questions you identify. The issues gathered in this survey will be published in the UK Database of Uncertainties about the Effects of Treatments (UK DUETs – www.library.nhs.uk/duets). However, if you make a suggestion, you will not be identified personally and your name will not be published anywhere.

What question(s) about 'interventions' for children and young people affected by neurodisability would you like to see answered by research?

Some questions about you

It would be really helpful to know a little more about you, so we would be grateful if you could answer the questions in this section.

1. Which of these best describes you? (Please tick all that apply) I am a young person aged 24 or under with a neurodisability 

I am a person aged 25 or over with a neurodisability  I am a parent, carer or relative of someone with a neurodisabilty  I am a health professional  I am part of an organisation supporting disabled people 

Other, please state ______

If you are answering only as a healthcare professional please go straight to question 4.

If you are a young person, parent, carer or relative, please answer questions 2 and 3.

2. Where in the UK do you live? London 

England (not London)  Northern Ireland  Scotland 

Wales 

Outside UK 

Other, please state ______

3. What is your ethnic group? White 

Black  Asian  Mixed race  Other 

You only need to answer this question if you are answering as a clinician or healthcare professional.

4. What is your profession?

Paediatrician 

Paediatric Neurologist 

Surgeon 

Audiologist 

Nurse 

Administrator or Manager 

Speech and Language Therapist 

Physiotherapist 

Occupational Therapist 

Orthotist/Prosthetist 

Psychiatrist 

Psychologist  Dentist 

GP 

Other (please specify) ______

______

Next steps

Would you like to be kept informed about the next stages of the project, when the research questions will be prioritised?

Yes No

If you answered ‘yes’, please supply your contact details. Your contact details will be kept confidential and securely, in accordance with the Data Protection Act. They will not be revealed or passed on.

Name ______

Email or postal address ______

Thank you for completing this survey.

Please return this form to: [email protected] Or mail to FREEPOST RSUT-KTJT-LAKJ JLA CDPSP Veysey Building, room 008 Salmon Pool Lane Exeter, EX2 4SG