Last month, Leeds Parent Carer Forum hosted an online workshop with the Leeds Teaching Hospitals Learning Disability and Autism Team. This team plays a vital role in supporting children and adults with a diagnosis of Learning Disability or Autism when they need hospital care.
The session gave parents and carers practical advice on:
- How the team can support your child during hospital visits
- The importance of Health Passports
- The role of the Play Team in reducing stress and anxiety
Whether your child has an upcoming appointment or you simply want to be prepared, this information can make a real difference.
Watch the Workshop
If you missed the session, you can catch up here.
What is a Health Passport?
A Health Passport helps hospital staff understand your child’s needs and make reasonable adjustments. There are two types:
- Autism Health Passport – for Autistic people
- Learning Disability Health Passport – for people with a Learning Disability or both diagnoses
You only need one passport. Find out more and download templates from the NHS Leeds Teaching Hospitals website.
Key Questions Answered
Here were some of the questions and answers during the session:
Can I self-refer to the Learning Disabilities and Autism Team?
Yes. Contact the Duty Clinician Monday–Friday, 8am–4pm on 0113 266836 or email leedsth-tr.ldautism@nhs.net.
How can I prepare my Autistic child for medical tests?
Refer them to the team using the details above. They can help with preparation and create a reasonable adjustments plan.
Please also take a look at LCHTV, which offers the opportunity to explore wards within Leeds Children’s Hospital , as well as get an understanding of procedures you may have to have whilst on treatment.
What if my child panics during procedures?
Play Specialists and the LD & Autism Team can support with play-based strategies, desensitisation, VR tools, and distraction techniques. They can also provide easy-read patient information leaflets.
Please complete a Health Passport for your child and send it into the team at leedsth-tr.ldautism@nhs.net. If you have any difficulties, then give the team a call on 0113 266836 and they can help you complete it.
The team can also add a PAS flag onto the Patient Administration System, to show that the patient needs reasonable adjustments.
How do I alert A&E staff that my child needs reasonable adjustments?
The Receptionists will not automatically know that your child has a diagnosis unless a PAS flag (see above) has been added to the electronic system.
Ask for a Care Bag – they are available in A&E receptions and on acute admissions wards. They are available for adults and children and you do not have to have a formal diagnosis to access them.
Are reasonable adjustments available?
Yes. The team can create a plan and add it to the hospital’s electronic patient record.
Is staff training provided?
The Trust is in the process of introducing mandatory training on Learning Disabilities and Autism (Oliver McGowan Training).
Pre diagnosis help for children that are on waiting lists/pathways?
This team cannot offer Health Passports/PAS flags or direct support for people that are on waiting lists for Autism assessments. However, they are still entitled to reasonable adjustments. The advice from the team is to make contact as soon as you have an appointment with the relevant team to discuss your person’s needs.
If your child/person has an EHCP Plan or a SEND diagnosis, tell the Doctors/Nurses at the Hospital this as they can document it on their records. None of the electronic patient records communicate with each other, so make sure that you tell the GP, Dentist and other healthcare professionals and they can add it onto their records in the community too. They have a duty to ask if your person needs reasonable adjustments and what their preferred method of communication is.
Some departments at the hospital have a Staff Champion for Learning Disabilities and Autism and they are often a good source of support. GP practices might have a Learning Disabilities Care Coordinator or person responsible for the Annual Health Checks for over 14 years old. The Practice Manager can also ensure that there is an alert on the person’s notes for their reasonable adjustments.
You might want to complete an ‘All about Me’ document to share with health care professionals see example attached. Your child’s school might have a document that would be appropriate to share with Health Care professionals.
Where can families access Autism training?
The Learning Disabilities and Autism Acute Liaison Team at LTHT do not offer training to family members, but there is training available via:
- Leeds Community Heath Care – Speech and Language Therapy Services: Workshops for parents and carers – Leeds Community Healthcare
- Little Hiccups Support Group: Educational / Informative – Little Hiccups
- Cygnet Autism Support: A programme for Parents and Carers of children and young people aged 5-18 who are Autistic Cygnet Programme Providers Map
- STARS – Specialist Training in Autism and Raising Standards: STARS Team – Information for Parents and Carers | Leeds for Learning
- 0-19 Team are a good source of advice, support and signposting. They can refer for assessments from Speech and Language Therapy and cognitive delay in children: 0 to 19 public health integrated nursing – Leeds Community Healthcare
What if my child struggles with vaccinations?
The Leeds Community Healthcare Immunisations Team can help. Contact Lisa Smith, Learning Disability Lead Nurse: lisa.smith31@nhs.net.
Want to learn more?
- Watch the workshop here: https://www.youtube.com/watch?v=kR10c_W0D8w&feature=youtu.be
- Health passports: https://www.leedsth.nhs.uk/services/learning-disability-and-autism/health-passport/