31 January 2016 Lesley Eccott Community Learning Disability Nurse.

May 3, 2023Lesley Eccott Community Learning Disability Nurse

Definitions & Statistics Health Issues / Inequalities Communication Issues Mental Capacity Act (2005, 2009) Consent Issues Steps to consider for admissions related to

the learning disabled population Discharge Planning Outpatients

May 3, 2023Lesley Eccott

A state of arrested or incomplete development of the mind

Significant impairment of intellectual functioning

Significant impairment of adaptive / social functioning

These impairments / difficulties are present from childhood,not acquired as a result of accident or following onset of anadult illness. WHO 1992 (World Health Organisation)


WHO (1992) ICD 10 (InternationalClassification of Disease) ¹Defined LD as: Mild – IQ 50-70 Effective communication / literacy skills, independent in

self care, maintain relationships / job Moderate – IQ 35-49 Slow comprehension, supervision to self care Severe – IQ 20-34 Marked cognitive impairment, damage to the CNS, limited communication, inability to self care Profound – IQ less than 20 Severe cognitive delay, immobility / restricted mobility,

incontinence, requiring full supportMay 3, 2023Lesley Eccott

Approximately 210,000 people have severe/profound Learning Disabilities in England

1.2 million people have mild/moderate learning disabilities in England

Valuing People (2001)Local Figures based on the Community Nurse LD databaseAdults = 620 approx Children = 131 approxThis doesn't include all people that are active cases for the LA &some that maybe known to GPs and not our service


Evidence shows that people with learning disabilities:

Increased mortality than non-disabled population Often have disease that goes undiagnosed Raised prevalence rates of (Psychiatric illness,

Epilepsy, Obesity, Sensory impairments, Gastrointestinal disorders, Cancers, Cardiovascular disease, Respiratory disease and dementia)

Mencap (2007), Hollins et al (1998), Michael J (2008)¹¹


As a result of these health issues people withLearning Disability have an increased risk of: Preventable deaths are 4 x higher than the

general population 58 x more likely to die before the age of 50 3x more likely to die from respiratory disease

(46% vs 15-17% of the general population) Women are less likely to access screening Breast 43% vs 57% Cervical 19% vs 77% Approx 80% do not take enough exercise


Organisational Barriers Time constraints within

appointments Accessible information Consent issues Inter-professional

collaboration Inequalities in access

to health promotion and screening services

Inadequate screening

Client Issues Communication

Difficulties Inability to explain

symptom profiles Fear of medical

intervention / non compliance

Inability to understand risks / benefits of treatment / investigation


DoH (2001)³, Baxter & Kerr (2002)4, Disability Rights Commission (2006)5

03/05/23Lesley Eccott, CLDN 9

Lack of health history (frequent move of residence, lack of documentation, inability to articulate accurate symptom profiles)

Factors associated with the Learning Disability:◦ Cognition◦ Expression of illness

Response to pain Judgmental remarks/negative assumptions

• “Has always hit his head” (dental decay, impacted ears) Nature of the information available. Often you

are relying on second or third hand accounts. Often accounts may vary from one carer to another

This leads to conflict of ideas and opinion

How to overcome communication barriers:


Assess the Individual’s ability to communicate

Proactively look at the organisational barriers

(time apt, menus, signage, pre-visits to ward area, level 1:1

support)

Provide alternative methods of

communication

Make reasonable adjustments to custom

practices (paraphrasing, providing explanation in

various formats, apt times)

Multidisciplinary working,ask carer for communication passport, request pic symbol books if used. Identify a key worker from home and ward

Points to Remember - people with LearningDisabilities may have difficulty expressing theirneeds, such as : hunger thirst pain distress toilet and washing requirements and basic

care needs staff should anticipate these needs, involve the carer / guardianassess non verbal signals and meet health need


Provides a legal framework to protect vulnerable people who lack capacity to make decisions

It helps people to take part in the decision making process (Mental Capacity Act, Code of Practice 2007)

Under the Act it is now a criminal offence to neglect the needs of people who lack capacity. This could lead to imprisonment if medical or physical needs are ignored for example: failing to provide healthcare, withholding medications, food or drink)


The five principles are: -1.A presumption of capacity (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.The right for individuals to be supported to make their own decisions (people must be given all appropriate help before anyone concludes that they cannot make their own decisions)

3.Right to make what appears to be seen as eccentric or unwise decisions

4.Best interest (anything done for or on behalf of people without capacity must be in their best interest)

5.Least restrictive of their basic rights and freedoms (anything done for or on behalf of people without capacity must be in their best interest and be least restrictive)

The Mental Capacity Act (2005)May 3, 2023Lesley Eccott

Seek / assess whether the individual has the capacity to consent to treatment

Record this in accordance with the Mental Capacity Act If unable to consent, there needs to be clear evidence

recorded as to what has been done by the Hospital, Family, Carers, MDT to help the individual understand what is required and therefore give informed consent

If it is felt that having done this the individual is unable to give consent then a best interest decision is made

Best Interest decisions need to be formally recorded in a meeting with relevant people (IMCA where there's no family involvement, Family, GP opinion, LA, CLDN)

The Decision Maker defaults to the person carrying out the procedure

Mental Health Act 1983 (Part 1V Treatment )

Reference guide to consent for examination DoH 2001

http://valuingpeople.gov.uk/dynamic/valuingpeople118.jsp


Host pre-admission meeting for planned admissions (See checklist handout)

Provide picture of the ward area, proposed treatment, may reduce anxiety and promote understanding and may increase capacity

Use assessment information provided to make nursing care appropriate to need

Ensure the ward is informed and prepared prior to the admission

Make introductions to the patient carer and wherever possible have a named nurse for the duration of the admission

Explain the process


Complete risk / dependency and support assessments (agree if additional support is required for the individual)

Agree the attendance of the support worker / the person who knows the individual the best to attend the ward round and provide vital feedback on how they feel the individual is

Request copies of Care Plans / Health Action Plans / Communication Passports


Continually explain the procedures, medication, changes in condition / treatment

Check the level of understanding from the patient and carer perspective (capacity / consent)

Document clearly the responses Include individual, family / carer, Care

Manager, Community Learning Disability Nurse as appropriate in the decision making process

Reassess the need for 1:1 support / increased support needs and negotiate this with the ward manager


Assess the clinical and individual needs for a single cubicle or ward bay

Some people with a Learning Disability will be more comfortable being cared for alongside other people

Others may feel isolated and frightened in a single cubicle

Whereas others with complex needs or challenging behaviour will benefit from the quieter environment of a cubicle

Make sure that the environment is physically accessible and safe


As appropriate request a discharge planning meeting

Ask the LA to carry out an assessment of need if there has been a change in care needs

Arrange OT assessment and visits home with OT as required

Inform all of the community MDT involved with the individual of the imminent discharge

Provide copy of the discharge report to the individual, support worker, community MDT


Some people with a Learning Disability may find these busyareas difficult and may become anxiousConsider: - Where appropriate offer the first clinic appointment Some may require a double clinic time slot to support their

consultation or at their pre-assessment appointment in support of their understanding and consent

Allow the individual time to explain themselves Check the level of understanding Avoid using medical jargon and consider using alternative

words and explanations during their consultation Try and perform all the necessary tests / investigations on

the same day


GPs Completing annual health checksPre-assessment Offer double apt as required Joint work with CLDN team as required Complete all tests at one apt Assess need (consent, capacity, support required during hospital

stay)Audiology Hold a screening clinic for people with LDCommunity LD Team Liaison with primary care and acute trust as required Health screening / assessment Offer support in the process of capacity and consent issues as

required Discharge planning as appropriate



DVD presentation


Valuing People support team www.vpst.org.uk Mencap www.mencap.org.uk National Access to Acute A2A www.nnldn.org/a2a Working together http://www.hft.org.uk/p/4/121/working_together.html Guidance and leaflets on consent to treatment for persons

with learning disabilities are available at www.dh.gov.uk and www.dhsspsni.gov.uk

Royal College of Nursing (2006) Meeting the health needs of people with learning disabilities: Guidance for nursing staff. RCN

The Clear Communication People Ltd. The Hospital Communication Book, version 2. Available from: www.communicationpeople.co.uk

Healthcare for All Sir Jonathan Michael - July 2008 http://www.library.nhs.uk/learningdisabilities


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31 January 2016 Lesley Eccott Community Learning Disability Nurse.

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