Improving experience for renal patients in London

Transcription

1 Improving experience for renal patients in London Survey results: Pan London Date London Renal Strategic Clinical Network January 2016

2 What best describes your current treatment? Please select one response. I have a kidney transplant. What best describes your current treatment? Please select one response. I do peritoneal dialysis. I am on haemodialysis. I am on a conservative care (non-dialysis) pathway. I am seen in kidney clinic for advance kidney disease ('advanced kidney care' clinic or 'low clearance' clinic). I am seen in kidney clinic for chronic kidney disease. Answer Options Percent I have a kidney transplant. 0.7% 4 I do peritoneal dialysis. 14.2% 80 I am on haemodialysis. 80.5% 453 I am on a conservative care (non-dialysis) pathway. 0.9% 5 I am seen in kidney clinic for advance kidney disease ('advanced kidney care' clinic or 'low clearance' clinic). 2.7% 15 I am seen in kidney clinic for chronic kidney disease. 0.9% 5 I am seen in kidney clinic for another reason (not chronic kidney disease). 0.2% 1 Other (please specify) 12 answered question 563 skipped question 15

3 If you are on haemodialysis, please tell us where you receive treatment. If you are on haemodialysis, please tell us where you receive treatment. Hospital with the main kidney unit Satellite unit on a hospital site Satellite unit in the community (not on a hospital site) Home Answer Options Percent Hospital with the main kidney unit 25.5% 117 Satellite unit on a hospital site 34.2% 157 Satellite unit in the community (not on a hospital site) 32.2% 148 Home 8.1% 37 answered question 459 skipped question 119

4 When making decisions about my care, the kidney team use leaflets, books or computers to help me compare my options. When making decisions about my care, the kidney team use leaflets, books or computers to help me compare my options. Yes, often Yes, once or twice No Don t remember / unsure Answer Options Percent Yes, often 29.1% 160 Yes, once or twice 29.5% 162 No 22.0% 121 Don t remember / unsure 19.3% 106 answered question 549 skipped question 29

5 There is a written plan for my ongoing treatment which has been agreed by me and the kidney team. There is a written plan for my ongoing treatment which has been agreed by me and the kidney team. Yes No Don t remember / unsure Answer Options Percent Yes 46.4% 256 No 20.3% 112 Don t remember / unsure 33.3% 184 answered question 552 skipped question 26

6 I know there are patient groups I can join. I know there are patient groups I can join. Yes, and I have joined Yes, but I have not joined No, I wasn t aware Answer Options Percent Yes, and I have joined 9.5% 53 Yes, but I have not joined 57.1% 320 No, I wasn t aware 33.4% 187 answered question 560 skipped question 18

7 It can be helpful to share experiences with other patients. When this is arranged formally it is sometimes called peer support. Do you know how to access peer support? It can be helpful to share experiences with other patients. When this is arranged formally it is sometimes called peer support. Do you know how to access peer support? Yes, and I have accessed peer support. Yes, but I have not accessed peer support. No. Answer Options Percent Yes, and I have accessed peer support. 6.1% 34 Yes, but I have not accessed peer support. 27.1% 151 No. 66.8% 372 answered question 557 skipped question 21

8 Do you get help from experts other than doctors and nurses (eg. dieticians, counsellors, physiotherapists or pharmacists)? Do you get help from experts other than doctors and nurses (eg. dieticians, counsellors, physiotherapists or pharmacists)? Yes, I get help from more than one expert. Yes, but limited help. No. Answer Options Percent Yes, I get help from more than one expert. 51.7% 291 Yes, but limited help. 27.7% 156 No. 20.6% 116 answered question 563 skipped question 15

9 I am involved in decisions about my care. Patients help how services are run in my kidney unit. When it comes to my treatment, my kidney unit My carers, family and friends are involved in my My kidney team treats me with care and compassion. I am able to discuss how I feel emotionally with my kidney Please check only one response. Please check only one response Strongly agree Agree Unsure Disagree Strongly disagree 0 Answer Options Strongly agree Agree Unsure Disagree Strongly disagree I am involved in decisions about my care Patients help how services are run in my kidney unit When it comes to my treatment, my kidney unit encourages me to do as much as I can My carers, family and friends are involved in my care in the way I want My kidney team treats me with care and compassion I am able to discuss how I feel emotionally with my kidney team (happy, anxious, low in mood) answered question 564 skipped question 14

10 Please select one response Please select one response Yes No Don't remember / unsure I have been asked questions about how kidney disease affects my life. I have been asked what I think about my treatment before this survey. Answer Options Yes No I have been asked questions about how kidney disease affects my life. I have been asked what I think about my treatment before this survey. Don't remember / unsure answered question 559 skipped question 19

11 Please select one response Please check only one response Yes No Don t remember / unsure Have you seen results from surveys about the care you receive? Are the results of surveys used to improve the care you receive? Answer Options Yes No Have you seen results from surveys about the care you receive? Are the results of surveys used to improve the care you receive? Don t remember / unsure answered question 562 skipped question 16

12 About you About you: Male Female Prefer not to say Answer Options Percent Male 62.2% 345 Female 36.8% 204 Prefer not to say 1.1% 6 answered question 555 skipped question 23

13 About you About you: Ethnic origin Bangladeshi Black-Caribbean Black-African Black (other) Chinese Indian Pakistani White Prefer not to say Other (please specify) Bangladeshi 2.6% 13 Black-Caribbean 15.2% 75 Black-African 12.2% 60 Black (other) 1.2% 6 Chinese 2.0% 10 Indian 6.9% 34 Pakistani 2.0% 10 White 43.5% 214 Prefer not to say 5.1% 25 Other (please specify) 9.1% 45 answered question 492 skipped question 86

14 About you What is your age? Prefer not to say Answer Options Percent % % % % % 115 Prefer not to say 2.5% 13 answered question 529 skipped question 49

15 Comments Unit A Very well cared for by all the team in the unit Quite happy with my treatment - all very caring The staff adopt a cheerful and positive approach A few times of late the unit is short staffed and can cause issues with our care and a strain on staff Lovely unit which runs very efficiently. Transport could be better Transport system needs to be looked at IE use regular drivers who know the patients Not enough staff

16 Comments Unit B They are brilliant at helping appropriate patients to carry out home haemodialysis independently or with assistance from family members. It's given me my life back, ever since I started doing it about 13 years ago. I don't feel that some doctors don't do as much as they can to see people and help out when making decisions on what to do next. Also when they chance drugs they don't always talk with the person before they do this Satisfied The temperature during dialysis is too cold. Almost all patients need blankets to keep warm... The care I receive from the home haemodialysis team is fantastic and I couldn't ask for more. Well contented Fantastic team

17 Comments Unit C I have always received excellent care from Prof Brown and her wonderful team. Thank you! Care and attention excellent Decisions have been made about my treatment without discussing with me that I have been unhappy about & I have been coerced into agreeing with them by nurses before I can discuss with consultant. I have no way of contacting my consultant outside of appointments when I am anxious or worried about treatment or when I have questions the nurses cannot answer. On many occasions I have felt that my concerns have not been listed to & I felt patronised.

18 Comments Unit D the unit works well as a team and they care for the patient with respect the nurses in this unit are pleasant its a pleasure to come to dialysis I am happy with my kidney team the doctors, nurses drivers and tea lady were all good to me be more comfortable for patients waiting to have decent seating. One chair has been broken for months and the chairs need to be higher to sit on and have arms. Many patients struggle to get up from them I still feel that I am not save/safe...things see, to change regularly without information Need more support and follow up appointment

19 Comments Unit E Wonderful team working together Good staff I have received excellent care from all staff Nurses brilliant but under lots of pressure More staff required. renal unit always running late. Twilight patients get connected after 18:30 I would like some counselling about my kidney disease. I have issues with transport... The consultant is such a world expert except he is not always available when I need to consult him understand my unit is understaffed. It takes too long...actually start their dialysis...it can be very lonely especially in the twilight session...it us a great pity that fraternisation between staff and patients is almost non existent

20 Comments Unit F I have no complaints about my treatment in this unit. The staff are caring and compassionate and always put my welfare and feelings first. They are also very cheerful and make this awful necessary treatment in my life more bearable. They are the best! Generally happy with my care especially with the nursing team. Definitely need to see renal consultant more. We need to have quicker and easier access to renal consultant. Need more feedback about transplant list waiting position. RE: help from other experts: "We see the dietitians if our monthly blood result is negative." The dialysis is our only option to stay alive before they send a nurse to needle you. She has to be ready., they use us to get experience and I find it very unfair. Any mistake [can] cost a life.

21 Comments Unit G Excellent care All the care and treatment I have received has been second to none and always picked me up at a time when I felt most unwell. A truly amazing and totally dedicated team. GOING ON HOME DIALYSIS WAS NOT A GREAT IDEA THOUGH IT GIVES ME FLEXIBILITY - BECAUSE: THE WORKLOAD PLACED UPON MY CARER IS ENORMOUS. THE RESPONSIBILITY PLACED UPON MY CARER IS VERY HIGH I CANNOT DIALYSE AT HOME ALONE, I AM TOTALLY RELIANT UPON MY HUSBAND/CARER AND THE SYSTEM TAKES ADVANTAGE OF HIM, IT OFFERS HIM AS MY CARER NO SUPPORT WHATSOEVER, HE IS EVEN HAVING TO FIGHT TO GET A RESPITE WEEK. all the staff nurses are nice but only we have to wait for transport for a very long time