Stroke Pathway Patient Engagement Newcastle Gateshead Clinical Commissioning Group Gateshead Stroke Association November 2016 1
Content Page Number Background 3 Aim of Patient Carer Engagement Methodology Patient Carer Survey Focus Groups Patient Stories 5 5-13 Monitoring Patient and Carer 13 Experience Recommendations 13 Conclusion 14 Feedback to participants 14 Appendix 1 Patient Carer Survey 15 Acknowledgements The CCG and Stroke Association would like to give thanks to Stroke Association Peer Support Group Stroke survivors and carers who gave their time to participate in focus groups and share their experiences. 2
Background NHS Newcastle Gateshead Clinical Commissioning Group have reviewed the current Gateshead model of acute stroke care and the time a person spends in hospital when they have a stroke. Following the comprehensive review, a new model will take effect from the end of November 2016. The CCG is confident that this change in service model will result in improved care for patients from Gateshead. The new model of care Under the new model: The majority of patients suffering from a suspected stroke will be taken to Royal Victoria Infirmary hospital by emergency ambulance which is consistent with the current practice New protocols are in place for ambulance crews to take patients suffering a suspected stroke to the hyper-acute stroke unit at Royal Victoria Infirmary If a patient makes their own way to hospital with a suspected stroke then they would be most likely to attend their nearest emergency department (A&E). If a patient attends the A&E at the Queen Elizabeth Hospital, they will be triaged using the FAST assessment. If the assessment shows a patient is having a stroke, an emergency ambulance will be called and they would be transferred under blue-lights to the Royal Victoria Infirmary. In-hours, an on-site stroke consultant could offer further assistance to the emergency care team at the QE Hyper-acute stroke services The hyper-acute stroke service will be provided at the Royal Victoria Infirmary and will include a 24/7 on call team of stroke responder nurses and medical staff who have specialist stroke training They will see all suspected stroke patients as soon as they arrive in the emergency department (A&E) or at the stroke unit Patients will be assessed and have diagnostic tests completed in line with the National Clinical Guideline for stroke, which has been prepared by the Royal College of Physicians This will often include a CT scan within the first hour of arrival in hospital and if indicated the patient will be given the recommended thrombolysis treatment as soon as possible after arrival in hospital Patients will remain in the hyper-acute stroke service for up to 72 hours Where patients will go after using the hyper-acute stroke service Depending when it is clinically appropriate, patients will either be discharged home or transferred to the acute stroke unit at the Queen Elizabeth Hospital It is anticipated that approximately 40% of patients will require a stay at the Queen Elizabeth Hospital before being discharged and a further 40% will be discharged directly to home supported by the Gateshead Community Stroke Team Acute stroke unit at the Queen Elizabeth Hospital The unit will have consultant cover during normal weekday hours 3
Patients who are transferred from the hyper-acute stroke service will be admitted to the acute stroke unit. A bed will be kept free to accept transfers of patients who have suffered a stroke or for patients who had been assessed at the RVI and found not to have had a stroke but need ongoing care in their local hospital. If there is no bed available in the unit then the patient will be transferred via the emergency assessment unit Patients who are already at the Queen Elizabeth Hospital and are showing signs of a stroke will be assessed by a stroke consultant. If this happened out of hours then a telephone consultation would be made with the on-call consultant at the Royal Victoria Infirmary. A decision would be made on whether to transfer the patient to the Royal Victoria Infirmary or continue to care and treat them at the Queen Elizabeth Hospital. The on-call telephone consultation already happens for patients at the Freeman Hospital and has been proven to be safe and effective Mini-stroke (TIA transient ischaemic attack) clinics Clinics will be provided by the Queen Elizabeth Hospital Mondays to Fridays and at the Royal Victoria Infirmary on Saturdays and Sundays Any patient follow-ups will be at the Queen Elizabeth Hospital Patients being discharged from the Royal Victoria Infirmary would be seen by the Queen Elizabeth Hospital s Assisted Discharge team or the Community Stroke Team in Gateshead Benefits of the proposed model Improvement in quality standards measured by the Sentinal Stroke National Audit Programme Patients will be admitted to a unit that meets the recommended standards of both national and local stroke networks Patients will have access to the most up to date treatments The service will be sustainable and robust The new service will ensure that patients in both Newcastle and Gateshead will benefit from the improvements to the stroke pathway Patients will have access to new treatments such as thrombectomy Patients will benefit from access to research programmes which are trialling the latest advances in stroke medicine. Engagement with the patients and carers The CCG, working with the Stroke Association have engaged with patients and carers to explain what the changes mean for them, to hear their concerns and gather intelligence on any issues affecting patients and their carer s. This report includes all of the findings from the engagement. 4
Aims of the patient and carer engagement The aim of the patient and carer engagement was to understand the current experience of stroke survivors and their carers and identify what are the key issues that need to be considered at each stage of the new model. The themes and issues identified will inform the monitoring of patient and carer experience post implementation stage of the new model. Methodology The CCG working with the Stroke Association developed a patient carer survey (Appendix 1) to identify both quantitative and qualitative information from patients on their experience of current services. The survey was sent to all patients who had experienced a stroke within the last 12 months and who had received treatment at the QE Foundation Trust. The survey included questions on what patients and carers views are on the current the stroke services any to identify recommendations on a new model. The themes identified from the survey provided a framework for focus groups facilitated by the Stroke Association and the CCG. Focus groups took place with patients and carers to enable patient and their carers to identify what issues or concerns may be relevant to them and what should be considered at each stage of the new stroke pathway to promote positive patient experience. Individual patient stories provided more depth qualitative information. Patient Carer Survey Respondents 90 survey questionnaires were circulated to all Gateshead QE stroke survivors who had experienced in a stroke in the last 12months. (58%) returned the survey. The response information was provided by the stroke association. Of those who completed the about section us section: Gender - 26 respondents identified as male and 21 female Ethnicity - 46 respondents identified as White British Age - 38 respondents identified as 65 and over Survey Questions and Reponses Survey questions Q1 When you had your stroke and an ambulance was called did it arrive in good time? Total Percentage Number YES 39 75% 5
Q2. On arrival to hospital, were you happy with how quickly you were seen by medical staff. Q3 At hospital did anyone explain to you and / or your family what was happening to you? Q4 Did you feel confident hospital staff had all of your medical information and were able to give you the right care? Q5 Were you given plenty of opportunities to ask questions? 47 90% 43 85% 44 85% 31 79% Q6 Were you given any information on your stroke? 37 71% Q7 Who provided you with the information and support on Stroke? Hospital Stroke Association 37 20 71% 38% Q8 Was all the information given to you about Stroke in a format easy for you to understand? Q9Did you and your family benefit from receiving this information Q10 Did the hospital stroke team help you in your recovery after your stroke? Q11 Were you treated with dignity and respect? 12 In your opinion, overall, were you satisfied with the Hospital service you Received? 46 88% 45 86% 47 90% 39 75% 39 75% Key Themes Identified from the survey responses Positive Theme Issue Direct Quotes Stroke association More than medicine support My wife received excellent attention from the Stroke Association. The worker from the stroke association was, absolutely brilliant The best part has been the aftercare of staff regarding my general health after my stroke and knowing I can contact any number of people to give me help, assistance and guidance. Stroke Nurse Importance of have access to a specialist stroke nurse my stroke nurse who visited me at home was really helpful and friendly 6
Stroke specialist team Importance of care from specialists The stroke nurse who came to my house very helpful and follow up phone calls. I felt so much better when I saw the specialist stroke nurse it s important to see people who really know what they are doing. Key Themes identified from the survey responses What could be improved? Ward Admissions Admission Procedure Admission to initial interim ward. I was brought by an ambulance from the RVI Hospital and placed in a side room (during lunch) but I was forgotten about and left for 1 and a half hours without a nurse call button, I was unable to walk. Should improve admission procedures. Dignity and respect Staff communication and empathy In accident and emergency there was little confusion as it was assumed I had been told after my brain scan that I had a stroke. In fact neither my wife or I had been informed. Some staff could be made aware of patients needs and to treat patients with a bit more dignity and respect. The aftercare could be greatly improved. After four weeks the after care is practically nonexistent! No one helped me to get to the toilet- I was left to have accidents. Communication in hospital Loneliness my wife felt very lonely and isolated outside visiting times. The experience left me feeling very lonely. Anxiety and depression Support at home On two occasions I felt a bit anxious and the stroke association have been good very listeners Discharge Waiting time I was told I could go and they packed my clothes in 5 minutes as someone needed my bed. I was then left in the passage for a long time for tablets. Lack of support The nurse said I shouldn t be on my own in my flat but there 7
Discharged too soon was nothing I could do. Pamela was discharged too early. Focus Groups Patients and carers who had completed the survey and members of the stroke associations peer support group were invited to participate in focus groups. 19 patients and carers attended focus groups, 15 were patients and 4 were carers. A diagram identifying the new stroke pathway was shared with the participants. Key themes identified from the survey were also shared. Diagram 1 Participants were asked to consider each stage of the new pathway and give their views on what needed to be considered to ensure a positive experience for patients and carers. A facilitator and scribe recorded the information shared in the focus groups. Key themes from focus group work on the new model Theme Issue Direct Quotes Ambulance Paramedics being able to recognise a stroke and take you to the correct hospital Ambulance arrival times Will all ambulance crews be able to recognise a stroke so that they can take you to the right place? Travel and Parking Costs Travelling and parking It is a worry for families going from Gateshead to the RVI with travelling and parking costs At the QE if you are in for a long term up t0 3 to 4 days you can get a parking permit for visitors Admission to hospital Admission Day of Week What day you are admitted has a big impact on what care you receive. 8
Admission to RVI Transfer from RVI to QE Communication Information sharing Expertise and specialist stroke team Keeping family/carers informed of transfer Keeping everyone informed at each stage of the new model Sharing medical information across trusts you have the best chance if you see a specialist at the RVI When patients are transferred to the QE relatives should be kept in informed of all transfer times Everything needs to be explained to you and your family about what will happen next it s really important that communication is clear and contact details for the RVI, QE and what to do next is given to given in a pack. I worry that not all my medical records will be shared properly across hospitals Ward Care Patient isolation it can be such a scary lonely place. Discharge Post discharge Discharge plan Should include all information; Introducing the discharge team before actual discharge who is visiting on what days Information for patients and carers about the effects of stroke from NHS and Stroke association. Medication Stroke association informed before discharge Record improvements Provide opportunity to meet other stroke survivors Most problems start at discharge You need to consider vulnerable patients who don t have anyone to care for them They say you are discharged and then you have to wait around for ages to get home with all of the stuff you need we need to know if our repeat appointments will still be at the QE? Equipment Services Rehabilitation Varying waiting times for wheel chairs and aids Exercise available GP follow up Therapists planned in I waited six weeks for a wheel chair you should have support as long as you need it. 9
Patient Telephone Interviews Patient 1 Mary On arrival to hospital. They took me to A&E and I was just dumped there and it was really scary. I didn t like that. My daughter and husband where sent out, I was on my own, it was horrible. I was left for about 30 minutes but it seemed much longer. Then I was taken to a side ward. I was taken for a CT scan and they were not sure if I had had a stroke even though I had a funny sensation down my left side. The results came through and I had a small bleed on the brain which I was told was quite rare. The neurology surgery team decided it was too small to operate on, this was quite reassuring. The Dr was very judgemental and I felt blamed for having high blood pressure, he was quite disapproving. I felt I had done something wrong and it was my fault. I don t smoke, I m not overweight as I eat well and just have the odd glass of wine but they just focused on my life style. They said I should have taken a pill to keep my blood pressure down but I didn t know that. I asked if this would go away and they said it might but it might not, they were very dismissive. In the ward day 1 I was taken to the stroke ward and put in a cubicle with two beds, an elderly lady occupied the second bed. I was monitored all night and put on a drip to lower my blood pressure. The night nurse on duty kept telling me to go to sleep and didn t have time to talk to me. She just asked if it was any worse but as this the first time it had happened I didn t know what worse was. I told her I was scared to go to sleep as I might die so I stayed awake all night, it was a horrible night. I was treated with respect, I was treated like it was my own fault, told not to be silly. The medical staff should have been more reassuring and talked to me so I wasn t on my own. The lady in the next bed was deaf and they had lost her hearing aid, when they eventually found it they couldn t find a battery. She was treated in a very patronising way, everyone was shouting and talking to her like she had dementia but she didn t she had hearing loss. I felt really bad for her. Day 2 The nurse in the morning was a lovely lady who was calm and reassuring and didn t talk to me like I was an idiot and explained about stroke support. The consultant came round, I didn t like him at all he was really patronising. He said I must take my medication for high blood pressure as it was dangerous if I didn t. Again this made me feel like it was my fault, I was responsible. I asked him if the feeling in my left side would get better but he said he didn t know. The physio therapist came round and he was really nice. He took me through some exercises and did a cognitive test. He said I was fine and I was discharged from physio, during the day he would pop in and ask how I was doing. Visiting time came and I was given a questionnaire on how much I drank, really it was hilarious. 10
Day 3 - Discharge in a meeting in the morning they said I might be discharged. I was told were some leaflets were from the stroke association. The discharge process was like a pantomime. In the afternoon the pharmacist said she didn t know if my medication would be ready, she was horrible and it was quite stressful. I had an ultra sound, a kidney scan which proved absolutely fine. The technician was really good and let me know straight away that it was fine but when I asked on the desk they said I had to wait for the result of the scan to be sent to the screen. The discharge was really funny because there wasn t one really. I thought what do I do now? The Dr gave me medication and that was it. I asked if I needed to see my GP they said I could ring and explain what had happened if I wanted to. I missed the stroke association as I had been discharged before they arrived. On Discharge I went to see my GP who was lovely and very supportive and shocked I had had a stroke. Day 5- Stroke association The stroke association rang and came out to see me. They gave me lots of time, and I was able to ask lots of questions which they were able to answer. I was really reassured and I cannot thank them enough. They referred me for physiological support as I now had a phobia about my blood pressure and being tested. I now take my own blood pressure. They also referred me to Live Well Gateshead and they were really great. I hadn t been to the gym before and I was a bit scared. I now go to the gym about 2 or 3 times a week. Follow Up hospital appointment It had no structure, didn t know what it was supposed to achieve. The consultant scared me - I was so terrified my blood pressure shot off the scales. A locum, agreed by the nurse, took my blood pressure and it was fine Patient 2, Susan s experience Ambulance arrival time it arrived in about 10minutes. I was a bit out of it. The ambulance people didn t know if it was a stroke or not, they thought it was low blood pressure. I was talking gibberish, my speak was slurred then it was back to normal. I was taken to the hospital to be monitored. Arrival at hospital I was taken to A&E but wasn t left in reception. I was seen to very quickly as it was 6:00am and the hospital wasn t busy. I was put on a heart monitor and tests were taken By 1:00 I was on the stroke ward. A stroke nurse carried out an assessment as this was happening I had another stroke. I then had a CT scan, an mri scan and more tests. I was asked about my health, but I have never smoked, I do not drink and I m generally in good health so that didn t explain anything also I m very young to have a stroke so don t think I fitted the usual criteria. 11
On the ward I didn t understand what was happening and it was very scary and I was frightened. I think as I was young and appeared to be able they didn t explain things and thought I understood. I didn t understand and I feel this was a massive miss in my care. The Dr came when my family and friends were not there. They said I has a bleed on the brain, but then I was given blood fillers, I thought, will this make me bleed more or give me a blood clot? I didn t understand so I asked my brother in law who is a Dr to come to the hospital when the hospital Dr was doing his rounds. Medical information they had made notes and I knew I had 4 files but one got lost. The porter was taking me for tests and I said I had 4 files but you only have 3, the porter had to leave me and look for the other folder. Then the Dr I was seeing went on holiday and another one came and he said information was missing so I had to start from scratch again. I think they should have taken better records. These are such basic things but little things make a huge difference. Asking questions about what was happening I was not capable of asking questions even though I think they thought I was. I was confused. They did tests but nobody came back with test results or explained what anything meant. The health staff were lovely and polite but their communication skills were poor. They would just give me pitiful looks I think that s because I m young. Information on a stroke In the corridor there was lots of information from the stroke association but you had to ask for it if you couldn t leave the ward. It was very useful. The cardiologist was good and drew a picture of my heart and explained what he thought might have happened when I had my strokes. Dignity and respect Yes on the whole I was treated with respect as I was able to speak up but I saw other patients weren t. The patient in the next bed couldn t eat with a knife and fork as she was right handed and that side was affected. I asked the nurse if she could have an adapted knife and fork and she was able to eat. The next day again she was unable to eat and no adapted cutlery was given to her so I asked again but thought what would happen if someone wasn t there to ask. The staff would put her in a chair but she would slide out so I would have to ring the buzzer on her behalf to get help. I was in hospital for 3 days and I hadn t had a wash, brushed my teeth or helped to get dressed, nothing. They assumed I was capable but I wasn t. I don t think they were deliberately neglectful and they were busy but it wasn t good enough and some staff lacked empathy to a degree. Some staff were so lovely and that made such a difference Discharge On the 3 rd day they said I could go. Then they said maybe not as I ve found something about you but didn t explain what it was. The consultant said the stroke had affected my right side but I explained it was my left. I was emotionally confused and in tears and we are just about arguing as I knew it was my left side. I wasn t then capable of rational discussion and a friend had to intervene as I was really upset. 12
Nobody had accessed my mobility they just gave me a stick to go to the toilet. Communication in general was poor. My mother phoned the ward and they said they couldn t find me and I wasn t on the ward, my mother came in to see me as she was worried sick. I was in for over a week and on christmas eve they said I could go home and go back in on the Monday. I had a little assessment and was asked to walk up the stairs and that was it. I was given medication and a copy of my discharge sheet. When I was home 2 hospital outreach staff came to see me to see if I was home safe and settled and I think that was a really good service. I think they phoned on Christmas day and for the next couple of days and this gave me confidence that I was been checked on. The hospital passed information to the stroke association and that was very good and a massive advantage as sometimes you are too proud to ask for help. When they came to see me it was a godsend. Post Discharge Appointment at Hospital 1 week after the stroke I saw the consultant and asked him questions, he just laughed with a nervous manner I just think he wasn t used to people asking questions. It felt a bit like I m the Dr I know everything and it s a secret, just listen to what I tell you. I was told about my history of having a hole in my heart but no one had told me, apparently the blood wasn t getting through. Monitoring Patient and Carer Experience post implementation of new model Patients and carers tell us that an independent process needs to be put in place to monitor patient and carer experience. It was suggested information should be gathered from patients and carers six months after the stroke. Suggested questions included: What was the ambulance arrive time and ambulance journey time? Were you taken to A&E or to a specialist stroke ward? Were you and your family informed that you had suffered a stroke? If you were transferred from the RVI to the QE, did you feel that this went smoothly? Did you feel well informed and kept up to date with your treatment and recovery? Were you treated with respect and dignity? Recommendations to the Stroke Project Board It is recommended that: The stroke project board to consider all of the issues identified by patients and carers in the engagement process. Develop an independent process to monitor patient and carers experience post implementation of the new stroke pathway. Consider how Newcastle patients and carers who experience a stroke receive support from the stroke association 13
Clear communication develop a single patient plan that includes all information relevant to the patient. This would include in hospital treatment, discharge and post discharge. Patients and carers to be at the centre of this process throughout their treatment and recovery. Response form the Dr Stephen Kirk on behalf of the Stroke Project Board All of the patient and carer engagement responses were shared with the November Stroke Project Board and reassurance was given that the issues and concerns would be addressed. Conclusion As a result of the engagement activity a number of key themes have been identified. The CCG are ensuring the themes patients and carers have identified will be addressed during the implementation stage and will inform the monitoring of patient and carer experience post implementation. Communication was highlighted as an area of concern. This included communication to patients at diagnosis and what they could expect from their treatment, communication with families and carers, sharing of information between the RVI and the QE and patients, carers and their families and information regarding discharge and ongoing support. In response to these issues, staff at the QE and the RVI are working together to review patient information. The availability and access to specialist services across a seven day period was raised by patients and carers. The RVI confirmed that consultant reviews would be taking place across a seven day period and access to therapy would be available seven days a week. Feedback to participants Dr Stephen Kirk chair of the stroke project board is meeting with patients and carers to provide feedback from the patient carer engagement. Copies of the report will be available for participants. This report documenting stroke patient and carer engagement will be made available on the www.newcastlegatesheadccg.nhs.net 14
Appendix 1 Stroke Survey Your Stroke Evaluation Your GP practice name When you had your stroke and an ambulance was called did it arrive in good time? Yes No Not sure / can t remember On arrival to hospital, were you happy with how quickly you were seen by medical staff. Yes No Not sure / can t remember At hospital did anyone explain to you and / or your family what was happening to you? Yes No Not sure / can t remember Did you feel confident hospital staff had all of your medical information and were able to give you the right care? 15
Yes No Not sure / can t remember Were you given plenty of opportunities to ask questions? Yes No Not sure / can t remember Were you given any information on your stroke? Yes No Not sure / can t remember Who provided you with the information and support on Stroke? Hospital Staff Stroke Association Other Was all the information given to you about Stroke in a format easy for you to understand? Yes No Did you and your family benefit from receiving this information? Yes No stroke? Did the hospital stroke team help you in your recovery after your Yes No 16
Were you treated with dignity and respect? Yes No you In your opinion, overall, were you satisfied with the Hospital service Received? Yes, it made me feel better It made no difference to how I feel No, it made me feel worse Using the space below could you tell us two examples of what were good experiences of your stroke care and two examples of what could be improved. Your answers to the questions and your comments inform the stroke support what you may require. Good Examples add in box below What could be improved add in box below Thank you for filling out this survey 17
FOR OUR RECORDS 1. Your gender Male Female 2. Are you a patient Yes No 3. Are you a carer Yes No 4. What is your age group? (Please tick one box only) Under 18 18 to 24 25 to 34 35 to 44 45 to 54 55 to 64 65+ 5. What is your ethnic origin? White British White Other Mixed Asian Black Other (please specify) Prefer not to say 6. What are the first 3 parts of your postcode? Please return this form to: Stroke Association Gateshead Regional Office 17 Marquis Way Team Valley Gateshead NE11 0RU 18