Cervical Screening of Women with Learning Disabilities Sandra Montisci (Head Nurse/Community Matron LD) Sally Davis (Community Learning Disability Nurse)

Health of PLD Less likely to consult GP Less likely to tell anyone if feeling unwell Less likely to have access to health education More likely to have difficulty co- operating with examinations More likely to be overlooked for regular health screening

Background Valuing People Now – a new three-year strategy for people with learning disabilities Department of Health, 2009 Healthcare For All – report of the independent enquiry into access to healthcare Department of Health, 2009 Ombudsman Report – Six Lives – the provision of public services to people with learning disabilities House of Commons, 2009

Barriers to Healthcare What barriers do you think women with learning disabilities might face in accessing screening? The Three C’s – What are they?

Consent People with learning disabilities are often excluded from making decisions about their own health DO NOT judge someone as incapable to consent until all practicable steps to help the person to make their own decision have been exhausted Decision about capacity to consent should be multidisciplinary and to seek advice from the carers or family who know the person well

Consent Adult without capacity? - The person wholly responsible for the intervention must decide if it is in the person’s “best interests” - Even if a person has not been able to consent, it is important to help them understand what is going to happen to whatever extent they can - No-one can consent to or refuse treatment on behalf of another adult who lacks the capacity to consent

Consent For screening to take place:  Understand what is screening is and the benefits  If person agrees and consents – who involved and where  If unable to consent – “best interests”, record

The Mental Capacity Act Enabling and supportive of people who lack capacity Aims to protect people who lack capacity and to maximise their ability and participate in decision-making

The Mental Capacity Act To ensure people with learning disabilities are not denied care or treatment 5 Principles 1. A person must be assumed to have capacity 2. A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success 3. A person is not to be treated as unable to make a decision because he makes an unwise decision

The Mental Capacity Act 4. All decisions made on behalf of a person who lacks capacity should be made in his best interests. 5 Must be achieved in a way that is the less restrictive of person’s rights and freedom.

The Mental Capacity Act A person is unable to make a decision if she/he is unable to: Understand the information relevant to the decision Retain that information Use or weigh that information as part of the decision-making process Communicate his/her decision

The Mental Capacity Act Don’t make assumptions Consider the person’s own wishes, feelings, beliefs and values Incapacity to consent only applies to that decision at that particular time Listen to family carers and supporters in obtaining a ‘best interests’ judgement Record Record Record!!!

Communication For some PLD problems are obvious e.g. they can’t speak or their speech is unclear. For some it may be less obvious e.g. they may not understand everything that is said or written down. Can affect their ability to function fully in everyday activities. Making positive changes to our own communication can help e.g. many PLD can understand more easily if you point, gesture or mime along with speaking, or use pictures/photos

What slows down or stops communication? Factors relating to the individual Factors relating to their facilitator Factors relating to the environment Factors relating to written information

Top tips for effective communication Tip One Get to know the person Spend time getting to know how the person communicates; If the person doesn’t already have one consider developing a “COMMUNICATION PROFILE”

Top tips for effective communication Tip Two Adapting your language Use short, simple sentences of common everyday words; Use the person’s own vocabulary; Try using open questions or changing the question around to check response. Avoid analogies as these may be taken literally.

Top tips for effective communication Tip Three Be prepared to use alternative methods of communication such as signing, charts or books

Top tips for effective communication Tip Four Allowing time During a conversation some people will need lots of time to understand and express themselves ; For some people you will need to go over ideas on a number of occasions – understanding may be a gradual process.

Top tips for effective communication Tip Five Never assume understanding Many people with learning disabilities will appear as if they have understood and may be able to repeat back what you’ve said. Always be cautious and check this out. Ask them to explain it in their own words.

Top tips for effective communication Tip Six Preparation for appointments Help people to understand what is going to happen and where by visiting GP Practice, Clinic etc. before their appointment date.

Top tips for effective communication Tip Seven Facilitating at appointments Try to speak to the person with learning disabilities first. Only ask for assistance if something is not clear. Be prepared to repeat, re-word or explain in several different ways what has been said and then allow the person to respond. Some people with learning disabilities are not used to being asked their opinion and will need encouragement.

Top tips for effective communication Tip Eight Do not assume the person will understand the link between an event and their illness. People with learning disabilities may not make the connection between something that has happened and them feeling ill.

Real object Video information Photos Beyond Words Books Clip Art Symbols Change Pictures

REMEMBER: There are always ways of increasing service users’ understanding and facilitating their expression IT’S UP TO US TO MAKE THE CHANGES

Ceasing Guidance – Food for Thought If unsure refer to the Best Practice Guidance January 2009 This should be a Multi-disciplinary decision if the person cannot make it – is the family history known, is there conflict as to whether the person is sexually active etc No where does it indicate who will talk to the lady about this. Even though she may not have capacity, does that mean that no- one should discuss the outcome with her?

Contact Details Sandra Montisci Tel: Mob: Sally Davis & Community Learning Disability Team (Birk House) Tel:

Thank You