What is a disability?

The Equality Act 2010 says that a person has a disability if they have "a physical or mental impairment that has a 'substantial' and 'long term' negative effect on your ability to do normal daily activities."

'Substantial' means that it takes much longer than it usually would to complete a task or activity, for example getting dressed or moving around. 'Long-term' means 12 months or more.

A disability can be different from an illness, even a long-term or 'chronic' illness. A disability will reduce the individual's ability to participate in normal daily activities but some people a chronic illness may be able go about their lives as usual. However it is important to remember that some illness can lead to disability.

It is not necessary for a child to have a diagnosis to have a disability. It can take time to confirm a diagnosis of disability and some children may have conditions so rare that may never be identified. The Children's Disability Nurse supports children with disabilities by need rather than diagnosis.

Bristol Royal Hospital for Children does not have a Learning Disability and Autistic Spectrum Disorder service. Children and young people with learning disabilities and/or autistic spectrum disorder are considered to have a disability and are supported by the Paediatric Disability Clinical Specialist.

Who am I?

Martyn Wood: Paediatric Disability Clinical Specialist

I came to Bristol Royal Hospital for Children in 2001 as a Registered Adult Nurse keen to work with children and young people. I worked on the Paediatric Intensive Care Unit for ten years and completed a conversion degree to become a Registered Children's Nurse in 2007.

In more than 20 years working in the hospital I gained a lot of experience working with children and young people, as well as their parents/carers, - including those with complex medical needs, learning disabilities and autistic spectrum disorder. I have been the Paediatric Disability Clinical Specialist since 2015.

The role of Paediatric Disability Clinical Specialist is to be a point of contact for parent/carers and professionals outside the hospital how have concerns that a child's disability may make coming into our hospitals challenging. My role is to try to make sure that there is equal access to healthcare for children with disabilities and I do this by liaising with the clinical teams and other services, like the Play Department or music therapy. I can also work with the ward or department the child will be visiting to make recommendations for reasonable adjustments that might make coming into hospital easier for the child and family to manage.

Please be aware that there is only one Paediatric Disability Clinical Specialist for Bristol Royal Hospital for Children and that I only work 25 hours a week, Monday, Tuesday, Thursday and Friday.

Outside the hospital

Local offer

Since 2014 every local authority has been required to share information about services in their area for children and young people (from birth to age 25) who have special educational needs or disability (SEND). This is known as the 'Local Offer'.

University Hospitals Bristol and Weston NHS Trust provides a local service for children and young people in Bristol and Weston-Super-Mare. Bristol Royal Hospital for Children is also a referral centre for specialist care for families across the South West region. Every local authority has its own local offer and these can be found here:

• Bath and North East Somerset (BANES)
• Bristol
• Cornwall
• Devon
• Gloucestershire
• Somerset
• South Gloucestershire
• Wiltshire

Links not working? Please let us know via ChildrensHospitalPassport@uhbw.nhs.uk

Parent and carer support groups

• Bath and North East Somerset (BANES)
• Bristol
• Cornwall
• Devon
• Gloucestershire
• Somerset
• South Gloucestershire
• Wiltshire

Links not working? Please let us know via ChildrensHospitalPassport@uhbw.nhs.uk

Contact the Paediatric Disability Clinical Specialist

My usual working times are Monday, Tuesday, Thursday and Friday, 9.30am to 3.45pm.

Phone: 0117 342 1571 (voicemail available)

Email: ChildrensHospitalPassport@uhbw.nhs.uk

Address:

Paediatric Disability Clinical Specialist,

Bristol Royal Hospital for Children,

Paul O'Gorman Building,

Upper Maudlin Street,

Bristol, BS2 8BJ

 

 

Welcome to UHBW's Children's Hospital Passport, a document to help children with life-long disabilities when going to hospital.

The aim of the Hospital Passport is to provide our staff with information about your child during a hospital visit. This information will help us work in partnership with you in meeting your child's needs when using our hospital services.

What is a Hospital Passport?

A Hospital Passport is a document completed by parent/carers, or the child themselves, that tells the hospital about their healthcare and disability needs, including how they communicate. This should make it easier for staff in the hospital to look after them. It can also make it easier for parent/carers, who often find themselves explaining the same thing over and over again.

Who can have a Hospital Passport?

Any child with life-long disability, including learning disabilities and/or autistic spectrum disorder, can have a Hospital Passport. In addition there are children with long-term illnesses or who need to be in hospital for a long time who may benefit from having a Hospital Passport.

How do I get a Hospital Passport?

Electric version You can complete the form online or by scanning the QR code below.	Paper version You can download a copy of the passport to print out.

 

Please return your Hospital Passports at least five working days before your child's planned admission date to allow us time to process and share it.

What information should I put on my child's Hospital Passport?

The information you put on your child's Hospital Passport should be what you feel staff in hospital need to know. It should be in your words rather than being too medical. It's about your child from your experience.

Do I need to keep the Hospital Passport with my child all of the time, just in case?

No. When the Hospital Passport is received by the Paediatric Disability Clinical Specialist an alert (a 'tag') is placed on your child's Electronic Patient Record. Your child's Hospital Passport will be stored on a secure internal website that authorised staff can access. This means that when you come to Bristol Royal Hospital for Children you will not need to carry the passport, hospital staff should print it out to use when you come in.

The Hospital Passport is yours to use in other settings if that would be useful. This means you can have a copy to carry with you for use in other hospitals or the GP.

How do I update the Hospital Passport if my child's needs change?

It is important that the information on your child's Hospital Passport is kept up to date so that it is relevant as and when you have to come to hospital. The recommendation is that passports should be reviewed:

• Every six months for children under 5 years of age
• Every year for children over 5 years of age.

In practice most people don't update their child's passport when they're not in hospital. If there are changes that need to be made when you come in then you can make changes to the printed passport and ask staff to send it to the Paediatric Disability Clinical Specialist.

You will receive a text message from the Paediatric Disability Clinical Specialist every year with a link to complete a new passport and if you would like a copy of your child's existing passport to help with this then you can request one by emailing ChildrensHospitalPassport@UHBW.nhs.uk.

My child will be transitioning to adult services soon; will the Hospital Passport go with them?

If your child's care will be remaining under either University Hospitals Bristol NHS FT ( Bristol Royal Infirmary, St Michael's Hospital, Bristol Haematology and Oncology Hospital, Bristol Heart Institute, Bristol Eye Hospital, Bristol Dental Hospital and South Bristol Community Hospital) or North Bristol NHS Trust ( Southmead Hospital) then your child's Hospital Passport will be sent to the adult Learning Disability and Autism services in those hospitalsif they have diagnosed learning disability or and/or autistic spectrum. This can be used to support transition.

If they do not have diagnosed learning disability or and/or autistic spectrum the Hospital Passport will be available to clinical teams in adult services and can be sent by the Paediatric Disability Clinical Specialist on request.

Children and young peoplenottransitioning to Bristol hospitals can have their Hospital Passport sent to teams in their local hospital on request.

My child has other care documents; can these be used in the hospital?

Yes. If your child has care plans or documents from other organisations or hospitals then these can be sent to the Paediatric Disability Clinical Specialist and these can be saved with, or instead of, the Bristol Royal Hospital for Children Hospital Passport. These can be scanned or, if submitted electronically, saved directly. These will then be used as needed as and when your child comes in to the hospital.