London Ambulance Service - Improving services for people with dementia: A report of the findings of 4 focus groups.

Transcription

1 London Ambulance Service - Improving services for people with dementia: A report of the findings of 4 focus groups. 1 Executive Summary 1.1 A total of 41 people participated at a focus group between September and December The groups generated feedback from people living with dementia and their carers. 1.2 Those taking part provided a range of constructive responses and ideas with the aim of helping London Ambulance Service improve the way it provides to people living with dementia. 1.3 The following key themes emerged for further discussion and development: Education and Training It would be best if all ambulance staff had training in how to identify and provide care for people with dementia and their carers. Managing Delays A community based scheme such as Community Responders or Dementia Champions would add reassurance and reduce risk during any wait. If a longer than usual wait is likely then this additional level of support would be a significant benefit to the person living with dementia and the carer. Carers LAS should consider a programme of awareness raising with staff about carers, their role, their expertise and the pressures they find themselves in. Providing Feedback People would like to give more feedback. Patients, carers and service users would like to say thank you and get more involved in providing constructive feedback to make improvements. 2 Background Information 2.1 Four focus groups were held in total between September and December Groups were held with people who are living with dementia and their carers. 1

2 2.2 All focus groups were independently facilitated by Patient and Public Involvement Solutions and were attended by a member of London Ambulance Service staff. Groups were held in venues across London and a total of xx people participated. 2.3 The focus groups were supported and arranged by voluntary and community sector partners. We would like to thank the following organisations for their help and support in carrying out the Focus Groups: Alzheimer s Society, Dementia Concern and Camden Carers. 2.4 London Ambulance Service wants to improve the services they provide to people living with dementia. Focus Groups were chosen as a way of talking in depth with people to learn more about opinions on a topic and to guide future action. To achieve this, groups needed to include people who have experience of living with dementia or caring for someone living with dementia and who have used London Ambulance Services in the past or who might need to use the services in the future. Participants were asked to think about the questions from the perspective of being a person living with dementia or a carer. 2.5 Five questions were asked, with the same question being asked at each group to ensure consistency. Additional prompt questions were used by the facilitator as appropriate to ensure participants were able to say all that they wanted to. Notes were taken at each event. Each participant was sent the notes from their relevant sessions after the event and invited to review them for accuracy. 2.6 The main body of the report is written through the words and phrases used by the people who took part. This has been done to ensure the language used reflects as closely as possible the intention of participants. 2.7 We would like to thank all those who took part for their time and generosity in sharing their thoughts, ideas and views. 3 Summary of Findings Question 1 - When you think of the London Ambulance Service, what does it mean to you? 3.1 The word cloud below provides an indication of words and phrases used. The more often they were used, the bigger the word appears below. 2

3 3.2 The majority of responses to this question were positive. People spoke of the service as efficient, reassuring and quick. When the LAS attended me, they were very caring and efficient, a very scary situation, they were absolutely brilliant. People talked about the service being the last resort, an organisation that can help and provide an immediate response in an emergency. 3.3 Carers specifically spoke of the reassurance the service can provide: as the carer I was panicking and they comforted me they straightened me out as a carer. 3.4 There was an early message about wanting to know that ambulance staff understood the implications of dementia and how it affected everyone concerned, I would like ambulance staff to understand dementia and give information. 4 Question 2 When you contact London Ambulance Service in an emergency, what do you want to happen next? 3

4 4.1 There were some useful general messages about what people want to happen next after they have dialed 999. Reassurance, kindness, empathy, calm, peaceful and efficient were all words that people used. 4.2 Some comments related to how people wanted to be communicated with including, appropriate and professional, friendly but not over friendly. People wanted to feel that all staff involved should know what to expect when a person with dementia was involved. Inform relevant people that the patient has dementia so when staff arrive they know what to expect, call handlers should understand all aspects of dementia. 4.3 In general those who took part in discussions expected the call handlers to be trained in how to deal with people who have dementia and their carers, speaking positively of their experiences of speaking to call handlers. I assume the person on the other end of the phone knows about dementia and the stages. 4.4 People mentioned the need for ambulance crews to be aware of the fact that the person has dementia before arriving. I would like medical records to be shared so they know exactly what s wrong, my husband falls into sleep episodes and an ambulance has been called on a number of occasions, each time we have to give the same information. Could a question be asked by the call takers as to whether the patient has dementia or Alzheimer s? 4.5 A number of the comments were specific to carers and a general theme about respecting the carer as an integral part of the situation was evident. This included, the carer as someone who has essential knowledge and experience about the person with dementia, as well as recognising the carer as a person in their own right who might be scared and anxious. If I need to call an ambulance, reassurance and calmness is important to me, someone else taking over and knowing I m not on my own. The call taker said it would be half an hour. It would have helped if someone had phoned me back. I informed them of my husbands condition but they left me on my own, Maybe they could have informed someone else so they could get in touch with me? There are so many different levels of dementia from forgetful to not being able to speak, my mum can t talk but they continue to ask her questions, better to ask the relative or carer. 5 Question 3 If there is a delay before an ambulance can get to you, what is important to you about the way this is managed? 5.1 In response to this question most people were looking for reassurance and regular updates about how long the ambulance was likely to be. People also wanted 4

5 to talk about the problem of short-term memory loss and how it can make information given by a call handler harder to retain. Call taker questions may be difficult for someone suffering from short term memory loss to answer Everything is made harder when suffering with a memory loss condition, frustration plays a big part. 5.2 A number of people talked about how the presence of dementia can make things more complicated. They said sometimes this is because people can t explain the facts or how serious something is. Other times it means the person doesn t behave in usual ways or follow instructions easily. We waited 5 and a half hours for an ambulance, even though I said the patient had dementia it made no difference. The patient was very confused and didn t understand why she was waiting. We thought she had a broken leg and she kept trying to get up, we couldn t stop her from getting up. 5.3 One group was keen to talk about the This is me tool developed by Alzheimer s UK and wanted the LAS to be aware of it. This is me is a simple and practical tool that people with dementia can use to tell staff about their needs, preferences, likes, dislikes and interests. 5.4 A number of suggestions were made about identifying someone locally who could be with the patient and carer whilst waiting for the ambulance to arrive. Some people had heard of Community or First Responders and there was interest in having Community or First Responders who had specific training in dementia care. 6 Question 4 - What would make you want to write a thank you letter? 6.1 In response to this question people talked about the need for a clear understanding of dementia and the implications of this at all levels of the service and everyone involved. Dementia being the trigger word, alerting everyone and every department 6.2 Many of the responses to this question were about the way people were dealt with and the attitude of staff. People talked about the best service as being, kind, gentle and caring, reassure me and talk to me nicely. People were also looking for a professional approach, cool, calm and collected, time is important, to feel secure. 6.3 Communication style was also essential, talking, asking questions, natural and friendly, a good sense of humour. To be aware of speaking clearly, but not in a patronizing way, eye contact, treating you as an individual. 5

6 Calling me pet or dear will not make me want to write a thank you letter! 6.4 People appreciated the ambulance crews speaking directly to the person with dementia, after waiting 5 and half hours when they did arrive they were very good impressed that they didn t just speak to us (carers) and the time they spent with her. 6.5 However carers were also keen to ensure they were recognised as an integral part of the situation and might have essential skills and knowledge about how best to manage the person with dementia in this situation. Listen to the carer, have confidence in us, carers are the spokesperson for our other halves. 6.6 Carers were also keen to show that they were grateful for help and to make it clear that as a carer it can feel isolating with a great deal of responsibility on their shoulders. Knowing that someone has cared for your loved one, would make you feel very grateful. 6.7 The idea of Community Responders or some help before the ambulance arrived was seen as the icing on the cake. 7 Question 5 What advice would you give London Ambulance Service staff about helping people living with dementia? 7.1 People in each group valued being asked this question and were very willing to provide constructive advice. 7.2 The following word cloud is created by using the words and phrases people used in response to this question, the larger the words appear the more often they were used across all groups. 6

7 7.3 There were lots of messages about how to be with people who have dementia: Talk to them like they don t have dementia, let them say what they want to say Awareness, individuality, respect.. To be calm listeners Not to be disinterested Human niceness and dignity Be patient and listen to what is being said 7.4 There were also a number that were specifically about dementia awareness: Going to hospital can be very disturbing Have awareness of the dementia, with details so it doesn t lead to unnecessary treatment or hospital admission. Its not about labeling people, its about communicating with people Communicate more with other services about my care Have knowledge about dementia, the side effects, the medication 7

8 Ask if they have a card listing any of their health conditions as this will say if the person has dementia I want to stay with my husband if he goes to hospital, he knows my voice 7.5 Some very practical suggestions were made too: Dementia concern have stickers for live alones with contact numbers on them When you call an ambulance have an alert for dementia, so I know if I m unwell my wife will be looked after Its not the same as mental health, would like a pathway into A&E for people with dementia One gentleman who attended a group had taken a great deal of time and effort before the day to make the following suggestion. It took great courage and emotion to share this idea based on his own personal experience of having been a carer for his wife. A patient entry card. A card that could be attached to the patient on arrival at hospital. The card would have the hospital reference number, ambulance mobile phone number, patient home contact number arrival time/date, patients name, main problem and then other problems that may be relevant. The ambulance crew would transfer the patient plus the Patient Entry Card to the relevant area at the hospital but the main handover would be given over the phone when the hospital are able to accept the patient. The benefits of this system are that the ambulance is immediately free for the next call and the patient is not left waiting in the ambulance. The immediate problems of dementia can be seen by the medics and a passing nurse can see patients name and use it to comfort. 8 Conclusions 8.1 Overall the service provided is appreciated by the people we met, the majority of whom reported very positive experiences, one lady said, I can t speak highly enough of them The following are themes that can be drawn from the feedback and are proposed as areas for further discussion, development and action. 9 Education and Training 8

9 9.1 Whilst most people reported positive experiences there were important messages about the complexities of people living with dementia. There are a number of initiatives aimed at ensuring people living with dementia receive the best services possible and it would be useful for LAS to look at how to ensure staff are aware of things like the, This is me tool and the Living alone stickers and how to use these to best effect. Ensuring all call handlers are dementia aware and that there is a process to identify if the person has dementia OR the carer needs help would improve the service received. It would be best if all ambulance staff had training in how to identify and provide care for people with dementia and their carers. 10 Managing delays 10.1 The nature of dementia means any delay in receiving help can lead to anxiety, an increase in dementia related symptoms, and additional pressure on already stretched carers. A community based scheme such as Community Responders or Dementia Champions would add reassurance and reduce risk during any wait. If a longer than usual wait is likely then this additional level of support would be a significant benefit to the person living with dementia and the carer. 11 Carers 11.1 It was evident at each group that Carers are under enormous strain. We encountered people who were, emotionally, physically and mentally exhausted. Recounting the experience of calling an ambulance was often a difficult and upsetting process. Many carers we spoke to were living with their own health conditions. Carers spoke of their fears for their own health as much as for the health of their loved ones. They were openly worried and upset at the thought of their loved ones being left alone or uncared for if they were to fall ill. What worried me is if I as the carer need to go to hospital, what would happen to my wife who has dementia? LAS should consider a programme of awareness raising with staff about carers, their role, their expertise and the pressures they find themselves in. 12 Providing Feedback 12.1 People living with dementia and carers alike valued the opportunity to give feedback through the focus groups. People would like to give more feedback. Patients, carers and service users would like to say thank you and get more involved in providing constructive feedback to make improvements A copy of this report should be sent to all service users who participated in the focus groups. 9

10 13 Acknowledgements 13.1 We would like to extend our thanks to all those who took part in the focus groups, for giving up their time and for sharing their experience to support this work. We would also like to thank all the organisations that helped to host and organise the focus groups and the London Ambulance Staff who ensured that all things ran to plan. 10

11 Appendix Demographics of people living with dementia focus group attendees We held 4 focus groups in total. These focus groups were held at various locations around London and were attended by a wide variety of people. Below, breaks down the demographics of the attendees. Gender of attendees: Male 8 Female 17 Unspecified 8 Year born: The answers given were: 1950, 1937, 1937, 1953, 1966, 1936, 1928, 1944, 1942, 1980, 1953, 1972, 1938, 1969, 1968, 1953, 1937, 1941, 1939, 1938, 1936, 1938, Year born Year born Do you have a disability or long-term health condition? (e.g. diabetes, asthma, epilepsy, mental health condition): Yes 9 No 15 Ethnicity of the attendees: 11

12 White British 17 White Irish 2 Any other White background 1 Mixed White and Black Caribbean 0 Mixed White and Black African 0 Mixed White Asian 0 Any other Mixed background 1 Asian or Asian British Pakistani 1 Asian or Asian British Bangladeshi0 Any other Asian background 1 Black or Black British Caribbean 3 Black or Black British African 0 Any other Black Background 0 Chinese 0 18 Number of attendees Amount 0 12