Clinical NURSE. Specialist SURVEY

Transcription

1 Clinical NURSE Specialist SURVEY RESULTS SUMMARY MAY 2 rk? o w ou y o ed r ew e i h v e W r ou y do nts? e r e e Wh r pati tle? i t you job u o is y t ase a e h s i W of d th? s a re k wi a t r a Wh ou wo y do

2 Background Between 2th February and 24th March 2, Pancreatic Cancer UK conducted an online survey of clinical nurse specialists working with pancreatic cancer patients. This exercise updates the findings of This CNS survey report sets out the a similar survey we carried out back headline responses received for each in 2, which helped us produce question, together with a summary of our Study for Survival report. We comments left by individuals. The full wanted to look at how conditions and attitudes have changed over the past four years. This is because, as a charity, we know the vital importance of Clinical Nurse Specialists (CNSs) to good patient experience and how much they are valued by both patients and their families. In fact, both English and Welsh Cancer Patient Experience Surveys conducted over recent years have demonstrated time and again the clear link between access to a CNS and a patient having a better care and treatment experience. 2 PANCREATIC CANCER Clinical Nurse Specialist Survey comments have not been reproduced in order to ensure the anonymity of respondents. These survey responses will allow us to campaign to better ensure CNSs have the capacity and resources they need to spend more time helping support patients in future.

3 Executive Summary The survey received 77 responses from all parts of the UK, although not every respondent answered every question. Where questions were the same as those asked in 2 as part of our Study for Survival report, a comparison between the previous survey responses has been made to show the implied movement in attitude/situation. Theme Clinical Nurse Specialists do not have enough time with patients and workload has increased. Half of CNSs disagreed with the statement I am able to spend as much time with my patients as necessary (3 per cent said tend to disagree and 4 per cent said strongly disagree ). In 2 for Study for Survival, 47 of respondents said they were unable to spend as much time with their patients as they would like. 3 of CNSs thought they would have less time to spend with patients in the next 2 months. In 2 this was per cent of 4 CNSs said their workload had increased over the past 2 months (4 per cent said increased substantially, 2 per cent said increased moderately ). This compares to 8 saying their workload had increased over the past 2 months back in 2. 9 of CNSs believe their workload will increase over the next 2 months. Almost half (47 per cent) of 74 CNSs said they were the only nurse specialist working in a role that covered pancreatic cancer in their hospital. This compares with a third of respondents back in 2. Over half ( per cent) of CNSs said they disagreed with the statement I have enough time to keep up to date with the latest developments in pancreatic cancer (4 per cent said they tend to disagree and per cent said they strongly disagreed ) Theme 2 Need for more support and resources for Clinical Nurse Specialists More than half (7 per cent) of CNSs disagreed with the statement I have all the support necessary to provide a quality service to my patients (48 per cent said tend to disagree and 9 per cent said strongly disagree ). In the Study for survival report of 2, the figure was 33. Almost half (49 per cent) of CNSs said they disagreed with the statement I have all the resources necessary to provide a quality service to my patients (4 per cent said tend to disagree and 8 per cent said strongly disagree ). In 2 the figure was 32. Over half (8 per cent) of 74 CNSs said they did not receive administrative support to help them with their job. A third (32 per cent) of respondents said they spent more than 2 of their time on administrative work. The largest proportion of respondents (37) said they spent between and 2 of their time on administration. Theme 3 Unpaid overtime and stress More than half (3 per cent) of CNSs said they disagreed with the statement I feel I am managing my patients and workload suitably well, without too much stress (4 per cent said tend to disagree, and 2 per cent said strongly disagree ) More than two fifths (43 per cent) of 72 CNSs said they were doing 2 to 3 hours of extra unpaid work each week. Over a quarter (28 per cent) said they worked more than six extra unpaid hours. Theme 4 What s the solution? More than three quarters (79 per cent) of 2 CNSs said local patient or carer support groups would help them to better help patients and their families. 74 per cent said of 2 CNSs said that more patient time with CNSs would help. 3

4 There were 77 responses received in total, although not every respondent answered every question. Q. Where do you work? Scotland 7.8 Wales.3 Northern Ireland 4.2 England North East 7.8 England North West England Yorkshire and Humber 7 9. England Eastern 7.8 England - East Midlands 7.8 England West Midlands. 2. England London 7 9. England South West England South East Q2. What is your job title? Pancreatic CNS.3 UGI & HPB CNS HPB CNS UGI CNS Macmillan CNS Pancreatitis CNS Other (summarised on the right) 4 PANCREATIC CANCER Clinical Nurse Specialist Survey A whole range of additional job titles were shared, showing the variety of CNSs dealing with pancreatic cancer patients. Responses included: UGI Research Nurse; HPB, Upper and Lower GI CNS; Palliative Care Nurse; various Macmillan posts, e.g. Macmillan HPB CNS; Advanced Liver Specialist Nurse; Pancreas-Biliary CNS; Acute and Rarer Cancers CNS; Upper GI CNS/ Endoscopist; Oncology Trials Nurse; HPB and Neuroendocrine CNS.

5 Q3. Where do you review your patients? (Tick all that are applicable) Q4. What areas of disease do you work with? (Tick all that are applicable) In consultant clinic Pancreatic cancers In nurse-led clinic On surgical wards 2 8. Primary/secondary liver cancers On medical wards 72.7 Colorectal cancers 3. In chemotherapy department UGI cancers In endoscopy department Cancers of Unknown Primary (CUP) On medical daycase unit Benign pancreatic disease In the community.3 Neuroendocrine tumours (NETs) Other/Comment (summarised below) 9.7 Other/Comment (summarised below) 9. A number of respondents also said they reviewed patients by telephone consultation/clinic. Other venues included acute admission unit or general or oncology wards. Work with a whole range of disease areas, including non-cancers, was reported. Q. Please tick the description that best applies I am the only nurse specialist working in a role that covers pancreatic cancer in my hospital I am one of two nurse specialists working in a role that covers pancreatic cancer in my hospital I am one of three nurse specialists working in a role that covers pancreatic cancer in my hospital 3. There are between four and six nurse specialists working in a role that covers pancreatic cancer in my hospital.4 There are more than six nurse specialists working in a role that covers pancreatic cancer in my hospital. Other (summarised below) 8. Some respondents explained that they covered two or more hospitals or that their post was part time.

6 Q. And how many Full Time Equivalent (FTE) posts working in a pancreatic cancer role at your hospital does that equate to? Q8. Have you been required to cover other areas outside your specialist role in the past 2 months? Yes general ward shifts Yes surgical ward shifts Yes other (please say in comments below) 4.4. No I have not been required to cover other areas 47 More than Comments were received from 29 respondents clarifying the arrangements in their hospital. In most cases (2) it was to explain that there was less than FTE post to cover pancreatic cancer. The other responses clarified other fractions, e.g.. FTE, and some specific, localised circumstances. Q7. Some nurses who work with pancreatic cancer patients provide a service for conditions other than pancreatic cancer. Roughly what proportion of your time would you estimate is spent delivering pancreatic cancer-related care? Comments were received from 24 people, with some explaining in more detail the type of cover they have given. Some respondents explained that whilst they had not covered other areas so far, they had been asked to do so but refused as they did not want to compromise the care they gave to the patients in their full time role. Some also explained they had ticked the no - I have not been required to cover other areas box as they had not been asked to give cover in the past 2 months but were expecting to have to do so in future, or had provided cover outside their specialist role more than 2 months before. Q9. Roughly how many shifts outside your specialist area have you been required to cover over the past 2 months? Less than Some respondents clarified that this varies substantially across the year More than None Nine respondents left comments, with some explaining that they are providing these extra shifts in addition to their own roles. In some cases it seems they are expected to cover other staff s lunch hours, or provide holiday and sickness cover. PANCREATIC CANCER Clinical Nurse Specialist Survey

7 Q. How many unofficial, additional, unpaid hours above your normal contracted hours do you estimate you work on average each week? More than There were 4 comments recorded, clarifying the tickbox answers. Three reported the need for an additional 2 unpaid hours a week on a regular basis in order to keep up with caseload, with another four saying they regularly work between and 2 hours a week. Q. Do you receive administrative support to help with your job? (Please list type of support in freeform text field) Yes No Q2. Have you had a review of your role in the past three years? Yes Yes more than Going through one at present No The comments left made clear the stress the whole review process creates for staff having to undergo this process, with respondents saying it made them feel like they constantly have to justify their role, or that CNSs were seen as expensive luxuries by managers rather than integral parts of a service. Q3. Does your trust support you with study leave to attend meetings and study days? Yes more than one day a year Yes one day a year 4.3 No have to take annual leave No cannot attend respondents left details of the type of support they received. This varied from clerical support for letters, access to shared medical secretary support, help with booking appointments and was a mix of full time support to just a few hours a week. A couple of replies explained a consultant allowed them to use their PA as support as needed. A number of comments indicated that whilst policy allowed them to attend study days in practice it was difficult to do so because of the difficulty in finding cover. Some said that only travel costs were covered and sponsorship had to be found to cover any course fees or they were limited to free courses or paying themselves. One stated that they had to always contribute of any course fees themselves. On a positive note, a couple of respondents noted that the situation had improved over the past year and managers have become more accommodating regarding study days. 7

8 Q4. A nd if you are allowed time to attend study days, does your Trust cover travel costs to and from the event? Yes Yes up to a certain value No Comments explained that the situation would often vary as to whether travel could be claimed or not. A couple of people noted there were specific funds to access for this but in some cases it is clear CNSs don t always claim for travel even if allowed too as they feel awkward about doing so. Q. Are you a member of any national body? (Please tick all that apply). Association of Upper Gastrointestinal Surgeons (AUGIS) Pancreatic Society of Great Britain and Ireland The British Liver Trust 2.9 Other (Please specify) Other bodies named included the British Association for the Study of the Liver (BASL), British Society of Gastroenterology (BSG) and the HPB Managed Clinical Network (HPB MCN). A few comments noted that cost prevented them joining any professional body. Q. Do you/your team have access to advice and support from a dietitian? Yes to a full-time pancreatic specialist dietitian Yes to a part-time pancreatic specialist dietitian.8 Yes to a full-time HPB specialist dietitian 3 4. Yes to a part-time HPB specialist dietitian 4.4 Yes to a full-time general dietitian Yes to a part-time general dietitian 8.8 No not at all Other (summarised below) Comments were received from 7 respondents clarifying the level of access they have to dietetic support for their patients. Several highlighted how whilst they had access to a dietitian, it was only for in-patients or only through specialist clinics. Where accessed through clinics, there were considerable delays which could mean a wait of several weeks. Obtaining urgent advice was difficult. Conversely a couple of replies stated that their Trust had recently recruited specialist pancreatic dietitians who were having a good impact and improving the patient experience. 8 PANCREATIC CANCER Clinical Nurse Specialist Survey

9 Q7. For each of these statements please indicate how much you agree/disagree: Strongly disagree Neither agree nor disagree Tend to disagree Tend to agree Strongly agree No. No. No. No. No. I feel able to satisfy my patients information needs I am able to spend as much time with my patients as necessary I have all the resources necessary to provide a quality service for my patients I have all the support necessary to provide a quality service to my patients I have adequate opportunities to access relevant training and education I have enough time to keep up to date with the latest developments in pancreatic cancer I feel I am managing my patients and workload suitably well, without too much stress Comments summary Comments received from respondents linking their answers disagreeing with statements to increasing workload, understaffing, and a lack of access to holistic care support for their patients, e.g. dietician, psychological support, welfare advisors etc. Some indicated they could only deliver quality service by working additional hours. One explained they could generally only keep up to date with developments in pancreatic cancer in their own time. Q8. In the past 2 months would you say your workload has: Increased substantially Increased moderately 33. Stayed the same 2 3. Decreased. Q9. Over the next 2 months do you anticipate your workload will: Increase substantially Increase moderately 3 3. Stay the same. Decrease 7. Comments received from six respondents, explaining the number of patients been seen is going up moderately. Two explicitly linked the increase in workload to being short staffed. One respondent noted that due to taking on more CNSs they expected their workload to decrease. 9

10 Q2. Over the next 2 months do you anticipate you will have: More time to spend with patients 9. Less time to spend with patients 3 3. About the same time to spend with patients One respondent noted that due to taking on a new nurse they hope to have more time to spend with patients. Another noted that they will only be able to spend the same amount of time with patients by working extra unpaid hours. Q2. In percentage terms, please estimate how much of your time was taken up with supporting the following pancreatic cancer patients over the past 2 months: < No. () -2 No. () 2-4 No. () 4- No. () -8 No. () 8- No. () N/A No. () (7.8) 4 (2.9) 7 (2.) (7.2) (7.2) (9.4) Patients undergoing treatments 3 (2.) 7 (27.4) 8 (2.9) 3 (2.) (9.7) 2 (3.2) 3 (4.8) Patients receiving follow up care in Year 23 (37.7) 9 (3.2) 4 (.) (8.2) 3 (4.9) (.) (9.8) Patients receiving follow up care in Year 2 3 (.4) (9.) 4 (7.) 2 (3.) (.8) 7 (2.) Patients receiving follow up care in Years (2.7) (.2) 4 (.8) 2 (3.4) (.7) 9 (.3) Patients receiving palliative care 2 (8.2) 2 (3.8) 9 (3.) (.2) 8 (2.) (9.) Newly diagnosed patients Comments summary A couple of respondents noted that they also support relatives over the telephone or liaise with GP community district nurses and hospices. Others reiterated that they also work with non-pancreatic patients. PANCREATIC CANCER Clinical Nurse Specialist Survey

11 Q22. Which activities do you undertake in relation to pancreatic cancer? (Tick all that apply). Providing practical and emotional support to patients 3 9. Providing advice and support to carers and/or family members Co-ordinating patient care Supporting and educating patients in their clinical choices 84.9 Ensuring palliative care needs are met Advising other clinical staff on pancreatic cancer issues 83.3 Administrative work Helping with clinical audits Training and education Providing direct clinical care to patients Training other staff 33. Non-specialist nursing duties Managerial duties Research Input into MDT Working with national professional bodies Administering chemotherapy Other activities noted included attending support groups, ordering tests, liaising with specialist centres, taking patient clinics and assessing patients on wards.

12 Q23. In percentages, how much of your time would you estimate is taken up with: < No. () - No. () -2 No. () 2-4 No. () 4- No. () -8 No. () 8- No. () N/A No. () Providing practical and emotional support to patients 2 (3.) 8 (2.) 3 (2.3) (7.2) 8 (2.) 8 (2.) 3 (2.3) (.) Providing advice and support to carers and/or family members 4 (.) (9.7) 8 (2.9) 8 (29.) (.) (8.) (7.7) Co-ordinating patient care 2 (3.2) 8 (2.7) 3 (2.) 2 (9.) (7.) 8 (2.7) 9 (4.3) 8 (3.) (.4) 3 (2.3) 8 (3.) (9.8) 7 (.) 7 (.) 2 (3.3) Ensuring palliative care needs are met (9.8) (8.) (.4) 2 (9.7) 9 (4.8) 8 (3.) (8.2) Advising other clinical staff on pancreatic cancer issues 4 (23.3) 2 (33.3) 3 (2.7) 7 (.7) 2 (3.3) 2 (3.3) (.7) (.7) 7 (.7) 2 (2.) 22 (3.7) 7 (.7) 8 (3.3) 2 (3.3) 2 (3.3) Helping with clinical audits 3 (3.) 3 (23.2) 4 (7.) 2 (3.) (.8) (.8) 2 (3.) 3 (.4) Training and education 8 (34.) 8 (34.) 8 (.) (.9) (.9) (.9) (.3) Providing direct clinical care to patients 4 (2.9) 7 (3.) 9 (.7) 3 (.) (.) (.9) 3 (.) (2.4) Training other staff 2 (37.7) 9 (33.3) 8 (4.) (.8) (.8) 2 (3.) (.) Non-specialist nursing duties 2 (37.7) 9 (7.) (.3) (.9) 2 (3.8) 2 (3.8) (.9) 2 (22.) Managerial duties (28.) 9 (.8) 7 (2.3) 4 (7.) (.8) 3 (.3) 2 (3.) (2.3) Research 29 (4.7) 8 (.) 2 (3.8) 2 (3.8) 2 (22.) Administering chemotherapy (8.9) 43 (8.) (9.8) 3 (2.3 (8.) 9 (4.8) 9 (4.8) 2 (3.3) (8.) 2 (.) (.2) (2.) (2.) 7 (34.7) Supporting and educating patients in their clinical choices Administrative work Input into MDT Working with national professional bodies 2 PANCREATIC CANCER Clinical Nurse Specialist Survey

13 Q24. What more information and support would help you to better help patients and their families? (Please tick all that apply). Better clinical signposts (e.g. clearer role of palliative care team) Local patient/carer support groups National patient/carer support groups 32. Updated written/online information materials More patient time with CNS Better information on patient discharge A national pancreatic cancer nurse specialist body 4. There were seven additional comments stressing the need for more resources/staff to allow more time with patients. There was reiteration that a maybe a national support system for pancreatic cancer nurses would help CNSs to be better equipped to support patients and their families. Q2. Which of the following Pancreatic Cancer UK resources do you/your hospital use/refer patients to? Annual HPB Nurse Study Day (Crewe) 34.7 Newly diagnosed patient information packs 82. Freephone Support Line for patients and families run by specialist nurses Health Professional section on Pancreatic Cancer UK website Online discussion forum for patients/families/carers Range of printed publications on treatment and care Website link to pancreatic cancer support groups across the country There were four responses, with a couple of respondents mentioning they found it difficult to attend the HPB Nurse Study Day due to funding problems, or asking for the day to be moved to another location. 3

14 Visit us online at: Follow us on Find us on Facebook : Talk to others in our Forum: Pancreatic Cancer UK Support Line: Pancreatic Cancer UK 2nd floor, Camelford House, 89 Albert Embankment, London, SE 7TW Registered Charity 278