13. The Hospital Passport for Autistic People

IMPORTANT

My medication and my medical history:

Please do not assume there is nothing wrong with me if I don’t express pain the in the same way.

How I experience pain:

For example, do you rub the part of your body that hurts? For other examples of what to put here, see the guidance notes at www.autism.org.uk/hospitalpassport

Please don’t make any changes to my medication without first talking to:

Name:

Role: Phone number:

How I communicate:

For example, do you use Makaton?

For other examples of what to put here, see the guidance notes at www.autism.org.uk/hospitalpassport

I am autistic. Please do not assume that I do not have mental capacity. The Mental Capacity Act has five key principles:

1. Every adult has the right to make his or her own decisions and must be assumed to have capacity to do so unless it is proved otherwise.

2. People must be supported as much as possible to make a decision before anyone concludes that they cannot make their own decision. If a lack of capacity is established it is still important to involve the person as far as possible in making decisions.

3. People have the right to make what others regard as an unwise or eccentric decision. Everyone has their own values, beliefs and preferences which may be different to other people. They should not be treated as lacking capacity for that reason.

4. Anything done for, or on behalf of, a person who lacks capacity must be done in their best interests.

5. Anything done for, or on behalf of, people without capacity should be the least restrictive of their basic rights and freedoms.

Information on the Mental Capacity Act is available from www.publicguardian.gov.uk

Things that make me happy

Other things you should know about me (please refer to page 6 of the guidance notes for examples)

Things I struggle with that cause me distress

For example, are you scared of needles?

For other examples of what to put here, see the guidance notes at www.autism.org.uk/hospitalpassport

How I communicate pain:

For example, do you groan when something is hurting you?

For other examples of what to put here, see the guidance notes at www.autism.org.uk/hospitalpassport

Ways to help me avoid distress

For example, does being told you’re getting an injection and you can look away help?

For other examples of what to put here, see the guidance notes at www.autism.org.uk/hospitalpassport

About autism Autism is a lifelong developmental disability that affects how people perceive the world and interact with others.

Autistic people see, hear and feel the world differently to other people. If you are autistic, you are autistic for life; autism is not an illness or disease and cannot be ‘cured’. Often people feel being autistic is a fundamental aspect of their identity. Autism is a spectrum condition. All autistic people share certain difficulties, but being autistic will affect them in different ways. Some autistic people also have learning disabilities, mental health issues or other conditions, meaning people need different levels of support. All people on the autism spectrum learn and develop. With the right sort of support, all can be helped to live a more fulfilling life of their own choosing.

The National Autistic Society 393 City Road London EC1V 1NG

Switchboard: 020 7833 2299 Autism Helpline: 0808 800 4104 Minicom: 0845 070 4003

TRFT uses the National Autistic Society’s ‘Hospital Passport for Autistic People’, however there are other variations that you may see being used by individuals. All will contain important information about a person’s everyday needs and wishes.

The Hospital Passport information should be completed by the person themselves, or someone who knows that person really well, ideally before they attend for their care.

This document should be regularly reviewed, as a person’s health and social needs will change over time.

This information can be used to assess whether someone’s condition has changed.

This document does not serve as consent to treatment or any other intervention. Consent must still be sought in every single context and the mental capacity of that person assessed. The passport is available on the Hub, or you can ask the Learning Disability and Autism Team or the Community Learning Disability Team. It is also available on the National Autistic Society’s website.

14. The Learning Disability and Autism Team (LD + A Team)

The LD + A Team is made up of a Learning Disability and Autism Matron and Nursing Associates.

The team is available Monday to Friday 8am – 4pm. Outside of these hours please consult the patient, their Hospital Passport and family / carers.

Email: rgh-tr.learningdisabilityandautismteam@nhs.net

Telephone: 01709 42 8371 (answerphone service available)

Nursing Associates visit autistic people and people with learning disability throughout the day and give them the help and support they need while in hospital, ensuring reasonable adjustments are made to their care pathway. The team also give support to people coming through Urgent and Emergency Care, outpatient’s and planned surgery.

They can help you to support patients in the following ways:

• Facilitate open and easy access for young people and adults with learning disabilities and/or autism accessing Trust services

• Give specialist advice and support for professionals in relation to personalised care and reasonable adjustments

• Provide accessible information

• Actively assist patients with learning disabilities and/or autism and their carers when using our services

• Provide support and advice regarding best interests, consent, advocacy, mental capacity and safeguarding

• Coordinate and assist the facilitation of learning disability or autism awareness training and further education to professionals to meet the needs of young people and adults with learning disabilities and/or autism

• Ensure that the views of patients and their carers are taken into account

Do you think you would be a great advocate for autistic people?

Would you like to gain further knowledge and understanding of how to care for this patient group?

If yes - then please become a learning disability champion for your ward or department!

15. Possible Triggers

Always check the person’s Hospital Passport for things that could trigger a distressed reaction. This will be found in the ‘Likes and Dislikes’ section.

Examples of what can trigger an emotional reaction in an autistic person can include; noise, touch / unexpected touch, hospital bed curtains being closed (can feel claustrophobic), not being warned about / told what is going to happen in detail, textures, eye contact, too much information given too quickly etc.

If someone is distressed, the best thing you can do is not encroach on their personal space, ask if they need time on their own, ask if they need support from someone else or if they would like you to stay, encourage deep breathing to refocus.

Autistic people may experience over- or under-sensitivity to sounds, touch, tastes, smells, light, colours, temperatures or pain. For example, they may find certain background sounds like beeping, which other people ignore or block out, unbearably loud or distracting. This can cause anxiety or even physical pain.

Many autistic people avoid everyday situations because of their sensitivity issues. Hospitals can be particularly overwhelming and cause sensory overload. There are many simple adjustments that can be made to make environments more autism-friendly. Contact the LD + A Team for more information tailored to your area.

Anxious episode / disengagement, sometimes called a ‘meltdown’ or ‘shutdown’

When everything becomes too much for an autistic person, they can go into an anxious episode where they disengage. These are very intense and exhausting experiences.

A meltdown happens when someone becomes completely overwhelmed by their current situation and temporarily loses behavioural control. This loss of control can be verbal (e.g. shouting, screaming, crying) or physical (e.g. kicking, lashing out, biting) or both.

Disengagement appears less intense to the outside world but can be equally debilitating. Disengaging can be a response to being overwhelmed, but may appear more passive - e.g. an autistic person going quiet or ‘switching off’.

One autistic woman described having a shutdown as: ‘just as frustrating as a meltdown, because of not being able to figure out how to react how I want to, or not being able to react at all; there isn’t any ‘figuring out’ because the mind feels like it is past a state of being able to interpret.’

An autistic person in this state may not present as being in pain or feeling unwell in a conventional way.

Extreme anxiety

Anxiety is a real difficulty for many autistic adults, particularly in social situations or when facing change. It can affect a person psychologically and physically and impact quality of life for autistic people and their families.

It is very important to find coping mechanisms to help reduce their anxiety. However, many autistic people have difficulty recognising and regulating their emotions.

Self- soothing

People use many methods to self-soothe. This can be called ‘stimming’. Stimming can be a variety of things, but not every person will do this, and what each person does can vary.

‘Stimming’ can include behaviours such as rocking, swinging, ticking, clapping/flapping hands, humming, rolling eyes, grinding teeth, squinting, licking, chewing, sucking on objects, wiggling / tapping fingers, staring at objects, lining up/stacking objects, dropping things to hear their sound… the list goes on.

Stimming is a self-soothing coping mechanism and should not be forcibly stopped. Stimming can be a sign of distress so if there is something obviously causing the distress, such as pain or loud noises, removing that may stop the stimming. If the patient is not causing disruption and is in no obvious distress, stimming is a harmless activity. However if you someone is disrupting other patients, you may wish to find them an alternative soothing activity or another area for them to continue stimming.

Highly focused interests or hobbies

Many autistic people have intense and highly focused interests, often from a fairly young age. These can change over time or be lifelong. Autistic people can become experts in their special interests and often like to share their knowledge. A stereotypical example is trains but that is one of many. Greta Thunberg’s intense interest, for example, is protecting the environment.

Like all people, autistic people gain huge amounts of pleasure from pursuing their interests and see them as fundamental to their wellbeing and happiness.

Being highly focused helps many autistic people do well academically and in the workplace but they can also become so engrossed in particular topics or activities that they neglect other aspects of their lives.

Autistic inpatients

• Speak to the patient and their carer (if present) to establish if they have any additional needs. If they are unaccompanied, and there is an identified need for support, you should attempt to identify a carer or relative and make contact with them as soon as possible.

• Details of the carer and contact numbers should be clearly documented in the demographics section of Meditech, but can also be found within the Hospital Passport for Autistic People.

• Request to see their Hospital Passport if they have it, as this may contain useful information to support decision making.

• If appropriate, fast-track autistic people or people with learning disabilities through the system. Where possible, keep their waiting time as short as you can.

• Contact the LD + A Team to make them aware of this person.

Planned Surgery

The Trust has a bespoke pathway referral system through Day Surgery, which may be appropriate for some autistic people.

If the person is coming to the Trust for a planned surgery and they are not from Rotherham, they will not have an autism flag on their record, as our information is from the Rotherham GP register. The LD + A Team put a special indicator on Meditech, as soon as they are alerted to an out of area patient coming to the Trust, usually via a pre-operative assessment, the Day Surgery Unit, or the surgical ward.

• Pre-op assessments can be supported by the LD + A Team, or can identify someone has a learning disability, to make the LD + A Team aware.

• The Hospital Passport for Autistic People is shared with the multidisciplinary team (MDT), so theatre staff, anaesthetists, consultants etc. for them to read. This helps us with our planning.

• For planned surgeries an MDT will form to discuss a bespoke plan for each individual patient.

• The plan may include how we will get clinical checks undertaken; home visits can be undertaken to get information.

The MDT plan all aspects of the admission; including all reasonable adjustments needed for them to receive their care.

This may include:

• If they need to be first on the list to avoid waiting

• If they need to take any medications before leaving home

• Arranging parking with security

• Planning who will accompany the patient to hospital and in anaesthetic rooms

• Arranging a cubicle

• Deciding if a Best Interest Meeting should be held, or if the person is able to consent to the investigation and or treatment

• Planning how to help with any phobias they may have e.g. needles, masks etc.

• Providing patient information in an appropriate format

Discharge

The LD + A Team are involved with complex cases of discharge planning with other professionals and the Trust Integrated Discharge Team (IDT).

Discharges may need input from the IDT if the person requires changes to care packages. This is on a Meditech referral system when someone is medically well enough to leave hospital.

The LD + A Team would liaise with Rotherham, Doncaster and South Humber NHS Foundation Trust (RDaSH) if the patient has an allocated professional involved from their service. If the patient would find benefit from contact with the RDaSH team, referral can be made at this point (either by the LD + A Team or therapy team).

Family would be involved in the discharge process, as well as any care providers.

On the day of discharge the patient / carer should be issued with a copy of the patient’s discharge report detailing the patient’s care needs on discharge and arrangements for support in the community, a copy is also sent to the patient’s GP. If the Community Learning Disabilities Team is involved, the discharge plan should be copied across to them.

Outpatients

If an autistic or learning disabilities patient needs to attend an out-patient appointment, the LD + A Team can be contacted to attend the appointment with them. They can also organise community support.

If a reasonable adjustment is required, which may be documented in their ‘Hospital Passport for Autistic People’, this should be marked on the patient record in order that this can be considered for future outpatient appointments. This could include having an earlier appointment or waiting in a quieter area.

Ensure the format of any patient information provided meets the patient’s needs. Contact the LD +A Team for information and support with Easy Read materials.