Assistance for children with learning disabilities or autism

Sheffield Children’s is committed to providing equality in access to its health care services. We recognise that for some children and young people this can be difficult.

We have a range of supportive services to support children and young people when accessing services here at Sheffield Children’s.

Learning Disability Lead Nurse

If you have concerns about how your child will cope with their hospital visit or medical procedure, you can get in touch with our Learning Disability and Autism Lead Nurse who can help with a range of supportive measures such as ‘providing accessible information (such as Easy Reads to help explain what will happen), pre visits to the hospital or service, or any additional or personalised support that may be needed to improve the child or young person’s experience.

If you feel this may be needed, please get in touch with us as soon as possible: Learning Disability Lead Nurse, Joanne Bowers on 07584 345848 or by emailing scn-tr.autism-ld@nhs.net.

Outpatients

In the Outpatients Department, we have a play specialist support service:

We have quiet rooms that can be used by children who find the main waiting areas difficult due to sensory needs. These quiet rooms can be booked in advance of your appointment to avoid disappointment by contacting our Play Team on 07920 765788.

If we are aware of your appointment, the Play Team can discuss with you what sensory equipment could be made available to support and distract your child during their hospital visit, so please get in touch with us in advance of your visit.

See our Outpatients page for more information.

Inpatient services

If you are coming to stay on one of our wards at Sheffield Children’s or attending an appointment for surgery, our Learning Disability and Autism Lead Nurse can support with reasonable adjustments where possible within ward environments.

See our Wards page for more information.

See the Your rights in hospital video from Mencap.

Coming for surgery

Having an operation can be an anxious time for children and young people. At Sheffield Children’s Hospital, we have a preoperative care service to support children and young people with additional needs in preparation for surgery. We aim to provide an individualised plan for each child, with reasonable adjustments to allow smooth progress through anaesthesia, surgery and postoperative recovery. We are usually involved in coordination of care, where there may be an advantage to perform several procedures under the same general anaesthetic.

There are three streams of additional needs service, depending on age and need.

Consultant led clinic

• Children with autism and/or learning disability
  • who are non-verbal
  • in Special School
  • having inpatient surgery at any age
  • having day case surgery aged 11 and over
  • are in residential care
  • who require elements of restraint in daily life
• Children with profound or complex needs, or who have other medical co-morbidities in addition to learning disability.
• Children with severe anxiety, previous anaesthetic refusal, or who require an anaesthetic contract.
• Children specifically referred for consultant review.

Preoperative practitioner led clinic

• Patients with autism and/or learning disability with good communication skills, who require preparation and reasonable adjustments that can be implemented by the practitioner. Includes primary school age children in mainstream school for day case surgery.
• Patients with moderate anxiety who require one-to-one preoperative discussion and preparation.
• Patients working though the needle fear worry ladder, who require a face-to-face appointment.

Play specialist clinic

• Younger children who require play based preparation and who may benefit from a preoperative visit to the Theatre Assessment Unit, a ward or theatres.

You can ask your health professional to refer to our service for additional support when discussing your child’s planned surgery. Subject to clinic availability, we may be able to arrange an appointment with the preoperative care service if surgery is proposed for your child and you would like to discuss the anaesthetic and possible reasonable adjustments before the procedure is booked.

Please email scn-tr.anaesthetic_preops@nhs.net  with your enquiry including your child’s name, date of birth and hospital number (if known). 

More information

• Managing worries about having anaesthetics
• Anaesthesia webpage

Video resources for preparation before visiting

• Coming to an outpatients appointment at Sheffield Children’s 
• Having your height and weight measured at Sheffield Children’s
• Having a blood test at Sheffield Children’s
  
• Having a urine test at Sheffield Children’s
• Having an operation at Sheffield Children’s Hospital (with Makaton narration)
• Hearing Services – what to expect
• Managing needle fear and anxiety
• Take a tour around Becton Centre
• Visiting Ryegate Therapy Block
• Visiting Ryegate Hydrotherapy Pool

Eye Department

If you are coming to the eye department, our team can offer pre-visits for you and your child, including trial visits to understand what the appointment might look like. The department can offer reasonable adjustments for your child including a quiet or sensory room.

It is important that you contact our eye secretaries in advance of your appointment so that we can put plans in place prior to your childs appointment. You can contact them through switchboard.

See our Eye Department page for more information.

Radiology

Radiology can be a busy department with equipment that can look very intimidating for children, especially those with additional needs. If you are coming to visit, we can offer support to help your child to have a successful appointment.

Please contact us prior to your appointment on 0114 2717238 so we can find out more about your child and plan for any reasonable adjustments required on the day. If you have a hospital passport (see below) please let us know so we can read it and do our best to support you and your child.

See our Radiology page for details of the support available.

Emergency Department

The Emergency Department can be a very busy and noisy place and we know this can be difficult for many children, especially if they are autistic or have a learning disability.

Please let us know if your child is likely to struggle with this and we will try our best to find you somewhere quieter to wait. We have fidget and sensory toys available if needed and can lend out ear defenders to help with the noise.

Please also let us know if your child needs help with communication, such as using symbols or Makaton, or if there is anything else that would make your visit easier, and we will do our best to help with this too.

If you have a Hospital Passport or Paediatric Pain Profile for your child, please bring it along and show it to the triage nurse so we can do our best to support you and your child.

Other supportive services

• Medical Day Care
• Transition

Hospital Passport

We know that staying in hospital can be a daunting and sometimes stressful experience. To support children and young people to communicate their needs, we have developed a communication and health passport, which can be downloaded below:

• Communication and Health Passport (PDF – 527.72 KB)

This passport provides staff with all the important information about your child’s support needs; about their healthcare, learning disability, how they prefer to communicate and how to make things easier for them when in hospital.

When you have completed the passport for your child, you can bring it with you when you come to stay at Sheffield Children’s. Please give the passport to the nurse looking after your child, as this will help them to understand what you need.

You can also email a copy to our learning disability lead nurse who will upload the form into your child’s patient records. The passport belongs to you and it is important that parents and carers keep the document up to date. It is for guidance only and may change. 

If you need support in completing a hospital passport, please contact our PALS service on 0114 2717594 or by emailing scn-tr.pals@nhs.net.

Alerts and flagging

We can also add an alert to your child’s patient information. This means that when a nurse or doctor is looking after your child – or looks at their hospital record – they will be able to see that your child is autistic or has a learning disability. This can help the staff in the hospital to understand that they need to provide reasonable adjustments to help your child access services in the Trust.

If you would like to have an alert added to your child’s patient information you can email scn-tr.autism-ld@nhs.net or call us on 0114 2717594.

Feedback

• Accessible feedback form for children and young people
• Accessible feedback form for parents and carers

Paediatric Pain Profile

Children with a learning disability or autism, particularly those who are non-verbal or have a language and communication disorder, may find it very difficult to grade their pain using our conventional pain assessment tools and may need an individualised approach to pain assessment, based on a comprehensive understanding of their affect and behaviour when in pain. This is provided by completion of a Paediatric Pain Profile (PPP) which can be downloaded here:

• Pain profile Record(1.59 MB)

This profile uses two baseline assessments of your child’s demeanour, in a good moment and in a painful moment, to provide a description of their individual pain behaviour, along with a score.

If you feel this would be useful for your child, please complete the baseline assessments prior to coming into hospital, giving it to staff on admission to help with staff assessment of pain.

Annual Health Checks

People with a learning disability are statistically more likely to have poorer physical and mental health.  An annual health check can help your child stay well and improve their health by spotting any problems earlier. All people with a learning disability age 14+ registered on the GP learning disability register are entitled to a learning disability annual health check.

• For more information, visit the Resource Library – https://tinyurl.com/2574p2z7
• Charlotte’s annual health check and health action plan (NHS England)

More useful information about learning disabilities and autism

• Autism service 
• Sensory processing difficulties
• Learning disability service
• The Mental Capacity Act: an animated guide (External – YouTube)
• Your rights in hospital (External – MenCap YouTube)