3 “I matter too !” Then think again… If you don’t think these things happen…Then think again…
4 “My precious baby was laid in the neonatal intensive care unit “My precious baby was laid in the neonatal intensive care unit. The doctor told me ‘Your baby has down’s syndrome.”“What does that mean?” I asked. “Well,” he replied, “He’ll never be a brain surgeon.”Sandra, Neil’s mum
5 “Our health visitor had been great – so supportive from day one “Our health visitor had been great – so supportive from day one. Then my daughter was referred to the Child Development Centre”“I asked for my health visitor to be my key worker. I was told no – it had to be a special needs nurse. It didn’t matter what I wanted.”Karen, Lucy’s mum
6 “I had to go to a special school on a special bus “I had to go to a special school on a special bus. I wanted to go to a school with all the other children. ““I’m not special. I’m just like you but I don’t learn as quickly as you. Why should I have to do things separately from you?”Jonathon Aged 20
7 “The doctor told me to go away and read up about autism “The doctor told me to go away and read up about autism. That is how my son was diagnosed. I feel disgusted that a doctor could treat a family like that in this day and age.”Chris, Andrew’s mum
8 “My beautiful son was very poorly with a chest infection so I took him to our doctor.” “The doctor told us that it was because ‘Of the way he is’ he tried to suggest his learning disability was the problem, not the chest infection.”Julie, Tom’s mum
9 “We talked through Karen’s needs and routines with the admissions nurse but this information was never passed on.”“In the end we had to stay at the hospital all the time just to make sure Karen would survive.”Bill, Karen’s father
10 “Nobody noticed that Max had developed a kidney problem or was malnourished until he reached the Intensive Therapy Unit. That’s what killed him”“Why would nobody listen to us when we told them something was terribly wrong?”Alison, Max’s mum
11 “After Laura’s operation I was very worried that Laura was not getting better as she did not speak.” “The doctors and nurses had not realized Laura had had a stroke. They said they didn't think Laura could speak because she has a learning disability.”Claire, Laura’s carer
12 “My GP is always in a rush “My GP is always in a rush. I’d like him to take more time when he sees me. I feel rushed because I don’t have enough time to explain what’s wrong and I don’t always understand what he says to me.”Elice
13 “Jack hates taking his clothes off if he is somewhere strange “Jack hates taking his clothes off if he is somewhere strange. He went for his flu jab but got upset when the nurse tried to take his coat off.”“Before I could do anything the nurse just gave the injection through his jacket. I couldn’t believe it.”Sam, Jack’s carer
14 “The doctor kept asking me questions that I didn’t understand “The doctor kept asking me questions that I didn’t understand. It got me upset and he said ‘Oh take her away!’”“The nurse was really nice to me and asked me to draw a picture about how I felt. I did it and he showed it to the doctor.”Lucy
15 “Our daughter is so full of energy and life and is a really happy person.” “But at the doctor’s one day, we heard him say ‘That’s not coming in to my room. It’ll trash the place’ – I was so angry and upset.”Jean, Victoria’s mum
18 People with learning disabilities are 200 times more likely die young! Old age is a long way off for me!
19 I can help myself by eating a balanced diet and staying healthy! Less than 10% of people with learning disabilities eat a balanced diet!
20 I can access screening programmes easily! People with Learning Disabilities are more likely to be excluded from screening programmes e.g 19% v 77% for cervical screening!
21 Despite accessing screening programmes there are still risks in life! The greater risks for people with Learning Disabilities include respiratory disease or coronary heart disease.
22 We are really both the same so why are our experiences so different?
23 Inequalities……And that’s why we need to implement service improvement for people with Learning Disabilities?
24 Drivers for improvement Government targets:‘Valuing People’ (DoH 2001)‘Valuing people, the story so far’ (DoH 2005)‘Valuing people Now: From progress to Transformation’ (DoH 2008)MENCAP “Death by indifference”Health and social care seem to be miles apart when speaking to the support staff
25 “Purpose” Reduce health inequalities clinical governance care pathways Improve communicationStandardise information/documentationRecord patterns in behaviour and symptomsReduce diagnostic overshadowingScreeningDeveloped in 2006 – whoPiloted 58 people – 2 providers – 3 monthsChanges made then rolled out and fully implementedA TOOL THAT:Ensures everyone has the same choice to health careAssists with picking up symptoms early so preventing crisis managementAssists with communication for day centres/PCT/GP practices etcAll providers and day services within the area have access to the same information and pathways.The calendar is objective and visually easy with pathways already set outLegal requirement that clients in Social Care have good documentation kept on themSupports carers with record keeping, improve standards of record keeping making it harder to other health professionals to refuse to treatProvides a story of a persons health with visual evidence over a monthly period – allows health professionals to see the person rather than a disabilityInformation re screening programmes for each client is easily accessible and up to date
26 10 key areas of health “What does it include?” Pain Bowels Urine Health ObservationMenstruation, changes to testicles/breasts, Mouth/teeth, seeing & hearingEating & drinkingSleepingMobility/FallsBehaviourDifficulty swallowing (dysphagia)Other symptomsPhotophobia, Fever, Coughing. Breathing & Seizures
27 New calendar each month First sheet contains info personal to each client and the screening programmes if not on screening programme – WHY?Things can then be done if appropriate to alert people back on to the call and recall systems for screeningScreening ages on here will be changed in 2010 to ensure we have the extended ages coveredWhen training support staff it is quite astonishing to discover the amount of people not being aware of the screening programmes and the eligible ages themselves let alone for the people they support
28 Prompting care staff to now assess on a daily basis As long as no problems it requires 7 initials in 7 boxes once a day but in turn we get a comprehensive assessment of someoneObservation only – not undressingFollowing same practice in them main but documenting clearer which then becomes a visual aidSmall enough to take to a GP apt when supporting someone
29 Team of registered nurses of varying disciplines but specialists to learning disabilities Designed to fit within national existing service frameworks and best practice guidelinesHave been designed using up to date clinical evidenceBased on priority levels for investigation and interventionDesigned to fit with current health services locally
35 Pilot 2 EvaluationRandom 3rd month calendar for every client…this gave us a good idea as they should have been used to completing it and in a routine…figures may be slightly out due to a couple of homes not completing daily as leaving out complete weeks with no indication as to why i.e holiday, social leave etcSignificant communication on the ACC itself wasn’t always completed although amber and reds were ticked.A lot more data for pilot 2The services are different and so the figures we have are different