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Palliative care: Working with people with learning disabilities

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Presentation on theme: "Palliative care: Working with people with learning disabilities"— Presentation transcript:

1 Palliative care: Working with people with learning disabilities
Dr Kerry-Ann Holder Principal Clinical Psychologist Paediatric Oncology

2 ‘Early contact with learning disability services will give the palliative care professionals the opportunity to acquaint themselves with the specific needs of the person with learning disabilities before the illness takes hold’ (Blackman & Todd, 2005:26) Research studies that were referenced during the conference identified (See above)

3 Group discussion What is your understanding of a learning disability?

4 Defining LD: more confusing terminology!
A learning disability is not...... A brain injury acquired after 18 years An illness or disease A mental health difficulty A learning difficulty* (this is suggestive of a problem in a specific area of learning)

5 *In the UK, the Warnock Committee has suggested that ‘Learning Difficulty’ should be used to refer to specific problems with learning that might arise as a result of issues such as medical problems, emotional problems, and language impairments

6 Understanding LD A learning disability is caused by the way the brain develops, before, during/soon after birth or in childhood Causes of learning disability can include genetics, childhood illnesses, or brain injury in early childhood, or unknown causes It can lead to problems with: Attention Perception (including perception of time) Short-term memory Comprehension Expression Coping with change People with a learning disability have global difficulties and find it harder than others to learn, understand, communicate and express emotions

7 Attention The person with LD may have problems with: Focussing on a request that is made Not staying focussed for very long Getting easily confused

8 Perception (including time perception)
The person with LD may have problems with: Their inner ‘time clock’ i.e. to know minutes, hours, days, weeks.. When the timing of events change, or when they are told something is not going to happen Integrating all of the information they are perceiving

9 Short-term memory Most people can remember up to 7 ‘bits’ of information The person with LD may have problems with: Remembering complex instructions Remembering what you have just said Repetitive questioning Telling the same story over and over

10 Comprehension The person with LD may have problems with: Being co-operative - especially if they have not understood what has been asked of them Reading and writing Getting easily confused Getting angry if they have not understood something Saying they have understood something when the have not (‘a veneer of social competence’)

11 Expression The person with LD may have problems with: Unclear or no speech Being misunderstood

12 Coping with change The person with LD may have problems with: Coping with minor or major changes (busy wards, changing staff etc) Coping when change is sudden (things being cancelled at the last minute) Coping when things don’t happen in the way or at the time they expect (being invited to an appointment at 1pm, but not being seen until 2pm)

13 Criteria for LD In the UK the World Health Organisation’s International Classification of Diseases (ICD) is used to define learning disability WHO define LD as ‘a state of arrested or incomplete development of mind’ Internationally three criteria are regarded as requiring to be met before a learning disability can be identified: Intellectual impairment Social or adaptive dysfunction Early onset (before 18years)

14 Defining learning disability (LD)
A significantly reduced ability to understand new or complex information and learn new skills (also known as an impairment of intellectual functioning) A significantly reduced ability to cope independently (e.g. difficulties in communication, self care, household tasks, social skills, safety etc.) Started before 18 years with a lasting effect on development Definition used by World Health Organisation and UK Government

15 Criteria for LD: 1. Intellectual Functioning
Classification of the first criteria for LD is as follows: Learning disabilities can be mild, moderate or severe Mild LD(IQ between 50-70) – the person can attain some skills required for independent living with the right support Moderate LD(IQ between 35-49) - a difficulty developing skills without considerable support Severe LD(IQ between 20-34) - requires a constant and consistent level of support in most aspects of their lives Profound LD(IQ below 20) - typically require intensive levels of support in all aspects of the lives

16 Group discussion In light of the formal criteria for LD just outlined what do you NOW understand about learning disability? Do you think you have worked mainly with people with learning disability or learning difficulties?

17 Ask me anything!  What issues concern you most about working with a person with LD in palliative care?

18 Working with people with learning disability (pwld) in palliative care: FAQ’s
How do we get the conversation started How do we manage challenging behaviour How and when should I contact a learning disability team

19 How do I get the conversation started?
A person with a learning disability is a person first and foremost, don’t shout or patronise! Pwld have varied interests, likes, dislikes, roles etc talk to them about this You may want to think about your tone of voice and your body language and minimise asking leading questions as pwld can be highly suggestible and acquiescent Find a good place to communicate – somewhere quiet without distractions Be aware that pwld will typically be part of a wider network of family and carers who may typically speak on their behalf, always include the pwld in the conversation even if they have difficulty understanding Think about how you describe who you are and your job – in my previous service we have symbols for each role and use photographs of ourselves in correspondence and when we meet the person Avoid using jargon, the skill in LD is making the jargon accessible and understandable

20 How do I get the conversation started?
Check with the person that you understand what they are saying – “it hurts when you do this? Is that right Don’t underestimate the value of thumbs up or thumbs down! You will need to be more observant and don't feel awkward if you cannot understand what the person says, or about asking family or carers for their help. Try drawing – even if your drawing is not great it might still be helpful. Take your time, don't rush your communication. Use gestures and facial expressions. If you are asking if someone is unhappy make your facial expression unhappy to reinforce what you are saying. Be aware that some pwld find it easier to use real objects to communicate but photos, symbols and pictures can really help too. Remember, all communication is meaningful, but you may need to work harder to understand.

21 How do we manage challenging behaviour (cb)
Everyone has needs, many of which require the support of others to fulfill. Individuals with brain injury have the same needs as people without brain injury; however the way they express those needs may be different Behaviour is a way of communicating our needs. CB may be the most effective way of a person communicating their needs at a particular time, it becomes reinforcing if it gets their needs met CB is not unique to people with a learning disability The consequences of exhibiting cb for people with learning disability may be that they are at increased risk of inappropriate interventions, exclusion, or negative labeling

22 What function does cb serve?
Social attention – It is not bad to want attention from others, but for a variety of reasons: limited communication skills, pain, boredom etc some people may learn that behaving a particular way is a reliable way of attracting attention from others, even if it is negative Tangibles – This is a desire for certain things, e.g. food, drink, objects, activities, that is providing the motivation for behaviour. Problems can arise when an individual learns to act inappropriately to get these things Escape – Some people crave attention, but for others being left alone is the ideal. Rather than behaving in a way to get attention the person may behave in a way to avoid situations Sensory – Behaviour can also be internally rewarding because of the sensation or stimulatory effects. These behaviours may be distressing to observers, but may be a positive coping strategy for the person who has adopted it

23 Understanding the behaviour: being a detective
Thinking with the team the ‘how, what, where and when’ of the client’s challenging behaviour enables us to look at factors that might be: Causing or triggering the behaviour – are there patterns to the behaviour? Maintaining the behaviour – what is likely to be keeping this behaviour going Making the behaviour worse or better – this may include time of day, specific people, certain things people say or do etc Keep records of the behaviour – consider describing what happened, who was around when the behaviour was exhibited, what you or others did to make the behaviour worse or better What you think the person is trying to communicate when they display challenging behaviour – are they in pain, are they trying to avoid a situation, are the finding the environment too much etc Once you have formulated the how, what, who and where you can look at developing a plan that tries to promote more positive behaviour – i.e. everyone in the team adopting the mode that has been identified as the one that reduces negative behaviour e.g. using the same instructions, being consistent If this behaviour is displayed away from the hospital how is it managed by staff or family? DO NOT underestimate the value of praise, consider how you will promote the behaviours you DO want to see

24 Understanding the behaviour
Assessment should serve three purposes:  It should collect enough information to lead us to an idea of what may be causing the client’s behaviour It should lead to the selection of a plan of action to manage the client’s behaviour, which fits both them and their environment It provides a useful way of measuring if there has been any change in the behaviour once a plan has been put in place

25 How and when should we contact the LD team

26 From this information we created a structure of the process involved in the management of an individual with a terminal illness. The diagram illustrates professional roles and when they may become involved. It includes the CST, as well as other services and organisations that may become involved. At the centre of the process, is the service user.

27 We also created an accessible version, which is still a working process and we are currently updating this with photos. This will be used with SU’s to inform them of the pathway

28 George’s story….Getting a diagnosis
George was a 63 year old man with a moderate learning disability. He lived in a supported care home with three other service users also with learning disabilities. George’s carers noticed that he was losing weight, seemed breathless at times and had a cough that was not responding to antibiotics and cough medicine. Not content with how George was, they had to raise their concerns with his GP, after a number of only ‘minor’ checks, they finally asked for a second opinion……. People with learning disabilities who may face a life-limiting illness do not seem to access the same services or receive the same quality of service as the rest of the population They are likely to find it very difficult to articulate that something is not right

29 George’s story….Supported decision making
Eventually, following tests George was found to have lung cancer. A decision was taken between George, medical professionals, his next of kin and his carers that it would be helpful for him to receive active treatment such as radiotherapy or chemotherapy. This was difficult however as he became very distressed with anything or anyone medical. It is important to help the person understand what is happening to them at every stage. Liaison with the Community Learning Disability Team (CLDT) was essential at the early stages as they could provide support around Helping George understand his diagnosis using accessible information in order to facilitate his ability to make capacitous decisions This enabled George to make supported decisions around his health care and treatment

30 George’s story….Treatment and hospital stays
Joint work between the Community Learning Disability Team and the Oncology Nurse helped George, staff and carers understand the impact of his treatment and signs of any changes, pain or distress. George did not often complain of pain and really only talked about his emotions in terms of being ‘happy’ or ‘sad’. The SALT and the team Psychologist met with the Nurse and adapted an information sheet for George and his carers, taking the key points and supporting this with visual information (symbols and photos). The psychologist and SALT also facilitated an Information Sharing session between carers, hospital staff and family. In addition advice was offered to the oncology nurse and MDT via George’s Communication Passport and Traffic Light System The Traffic Light System was developed in ABMU LHB - Red is the key information about the individual, such as any medication they are taking, allergies or medical conditions; Amber includes all the things that the staff should know about the patient. This includes the preferred way to communicate, such as words, symbols, signs or gestures. It also covers personal care and safety (e.g. triggers to challenging behaviour); -Green is the details that would make the stay in hospital more enjoyable - likes and dislikes such as food

31 George’s story….the illness progresses to terminal
George’s condition deteriorated and it was time to have discussions with George, his family and carers about end of life care. With the support of the CLDT the staff team and specialist nurse a ‘When I Die’ booklet was developed that included details about George, his wishes (where he wanted his funeral, whether he wanted to be cremated - George understood this as ‘going in the oven’ and this is what he wanted as he didn’t like slugs and snails to eat him in the coffin!), whom he wanted notified of his death, where he wanted his ashes scattered, to whom he wanted to leave his belongings too, hymns he wanted at his service, flowers, what he wanted to wear etc It is important that people with a learning disability are included in discussions about their end of life care, medical professionals may not be aware of the myriad of resources that are available to support people with LD and their families

32 Useful references/resources that supported George

33 People with learning disabilities who were facing a life-limiting illness do not seem to access the same services or receive the same quality of service as the rest of the population

34 People with learning disabilities who were facing a life-limiting illness do not seem to access the same services or receive the same quality of service as the rest of the population

35 People with learning disabilities who were facing a life-limiting illness do not seem to access the same services or receive the same quality of service as the rest of the population








43 Reflective practice… What one thing will you take away from today’s presentation?

44 Kerry-ann. holder@wales. nhs
Paediatric Oncology Children's Hospital for Wales Heath Park Cardiff CF14 4XW Tel: (Paediatric Oncology) Tel: (Child Health Dept, Children’s Centre)

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