Becoming a Learning Disabil i ty Champion!

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!

Contact the Learning Disability and Autism Team on ext. 8371 today

6. Reasonable adjustments

A reasonable adjustment is a change or alteration to the current care pathway that is acceptable to the person and the organisation.

We have a duty under the Equality Act 2010 to make reasonable adjustments. This means to consider things that could be reasonably changed e.g.

letting the person stay in a cubicle if it would make their stay better, organise for them to be listed first on a surgery list if they would like this to avoid undue waiting and anxiety, let family members stay overnight with them in the Trust, letting the person have access to food outside of designated mealtimes.

7. Involving family members/carers

If someone requires assistance, welcoming carers to visit at any time can be beneficial to staff, patients and carers.

Our Trust has pledged to let carers of people with learning disabilities or autism visit at any time of the day or night.

We can arrange for carers to stay in the hospital overnight if the patient and carer would like this.

A weekly parking pass is available

A weekly parking pass in available at a concessionary rate for family members or carers who are visiting someone in hospital for a period longer than 7 days. These are to be issued by a senior member of staff working on the ward who must inform the Reception Desk/Security Office by completing the Trust’s ‘Parking Concessionary Proforma’, that the patient’s stay in hospital is likely to be more than 7 days.

Free Parking Pass

Free parking is issued by a senior member of staff within the outpatient department, ward or service who must advise the Reception Desk or Security Office, by completing a Free Parking Authorisation Proforma.

Free parking will be available for:

• Patients who are required to attend frequent Outpatient clinics (3 times a month or more)

• Parents with children who are inpatients

• Cancer patients

Free parking is issued by a senior member of staff within the outpatient department, the Ward or Service who must advise the Reception Desk/Security office, by completing a Free Parking Authorisation Proforma.

Blue Badge Holders

There is an opportunity for blue badge holders, who use hospital services on a frequent basis, to be provided with a blue badge holders Trust car pass. Where this is applicable a senior member of staff from the ward/departments/service/clinic should provide the blue badge holder with a Blue Badge Car Pass Application Form.

Capacity to consent

The capacity of an autistic person or person with a learning disability to consent should be assumed in the first instance, however, if there is doubt, a Mental Capacity Assessment should be completed.

It is not acceptable or legal for a parent or carer to give consent on behalf of an adult with a learning disability.

This may not apply if the person with a learning disability does not have capacity and their family member or carer has a Lasting Power of Attorney or Court Appointed Deputy for Health and Welfare and authority to approve medical treatments. These views can be taken into consideration by the clinician when making a best interest decision.

If there is not a close relative who can support in the best interest process the individual is entitled to the services of an independent mental capacity advocate (IMCA) which staff can refer patients directly to. The referral form to Advocacy Services is available on the Hub.

The Mental Capacity Act Lead may be contacted for guidance if required to arrange this.

8. Possible Triggers

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

Examples of what can trigger an emotional reaction in someone with a learning disability 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, not wanting pillows on a hospital bed etc.

Increased stress can heighten emotional responses.

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, and encourage deep breathing to refocus.

9. Communicating with people with learning disabilities

Introduce yourself; say your name, explain your role and why you are there, what is going to happen and what that will involve, you may need to break this down in great detail.

For example, Hello my name is Jenny, I am a nurse, I am here to change your continence pad, that will mean I will have to move the bedding down, remove your continence pad and give you a wash, is that okay with you? I will ask you if I need you to move or if I need to move you.

Some people will need time to process the information that you are telling them. You can say ‘Would you like me to come back in 5 minutes?’. This will give the person time to think about what they have just been told and process that information.

Use of language – Do not use over-medicalised terminology, explain in plain English what the matter is with them, what treatment will be put in place, and when they will go home.

Sometimes resources can help communication with autistic people or people with learning disabilities. Please find some resources in the back of this folder, or use the resources in your area’s ‘Communication Station’.

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 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 someone is disrupting other patients, you may wish to find them an alternative soothing activity or another area for them to continue stimming.

10. Inpatients with learning disabilities

• 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.

• 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 people with a learning disability.

If the person is coming to the Trust for a planned surgery and they are not from Rotherham, they will not have a learning disability 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 if in a pre-op assessment you identify someone has a learning disability, make the LD + A Team aware.

• The Hospital Passport 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 sent 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, this will be marked on the patient record in order that this can be considered in future outpatient appointments. This may be earlier appointments or waiting in quieter areas.

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.

Mencap, the UK charity for those with learning disabilities, give the following advice:

1. Beware of missing a serious illness; important medical symptoms can be ignored because they are seen as part of someone’s disability.

2. Be more suspicious that the patient may have a serious illness and take action quickly.

3. Find out the best way to communicate; ask friends, family and carers for help.

4. Listen to parents and carers, especially when someone has difficulty communicating; they can tell you which signs and behaviours indicate distress.

5. Don’t make assumptions about a person’s quality of life. They are likely to be enjoying a fulfilling life.

6. Be clear on the law about capacity to consent; when people lack capacity you are required to act in their best interests.

7. Ask for help.

8. Remember the Equality Act; it requires you to make ‘reasonable adjustments’ so you may have to do some things differently to achieve the same health outcome.