Patient And Staff Stories - Macmillan Cancer Support

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The people behind cancer care – Patient and Staff storiesPatient and staff stories1

Patient stories

The people behind cancer care – Patient and Staff storiescoNTEntSIntroduction4About this report5Patient stories7The link between patient and staff experience28Listening to staff stories29Empowering and valuing staff31How Macmillan supports empowering staff37Staff Wellbeing38How Macmillan is supporting wellbeing43Training for Staff44How Macmillan is supporting training46Afterword48References493

Every person diagnosed with cancer should have a consistent,positive care experience and be treated with dignity and respectthroughout their cancer journey.Poor patient experience can impact on aperson’s health1, be related to poor recovery2,and is often associated with negative emotionsresulting from a lack of support once treatmenthas been completed. This can include patientsfeeling unsupported to cope with the side effectsof treatment and concerns about reoccurrence3.In contrast to this, people with cancer associatea ‘good’ patient experience with feelingsupported, respected and meaningfully involvedin decisions about their care, from diagnosisonwards4. Macmillan believes that a positiveexperience is one that recognises that canceraffects the patient’s whole life, including thelives of people close to them. Cancer patientsare more likely to consider the quality of theircare experience favourably if a number offactors are met. They must receive wellcommunicated information, be spoken tosensitively, feel they are being heard andinvolved in decisions, and be supported withthe consequences of treatment5.Research is beginning to indicate that theserelational aspects of care may be what patientsvalue the most. Findings indicate that ‘the qualityof technical care is often taken for granted, whilepatients and relatives comment more often onaspects of experiences and care mediatedthrough interpersonal relationships betweenstaff, patients and relatives6.’The majority of people with cancer receive good,compassionate care from the NHS. However, asthe Francis Inquiry Report into Mid StaffordshireNHS Trust7 highlighted, there are still too manypeople reporting a poor experience.4To make sure cancer patients receive a positiveexperience, and are treated with the highestlevels of dignity and respect, we believe NHSstaff need to be supported to deliver the bestpossible care. They also need to be treated withdignity and respect within their workplace.There is a growing body of evidence that showsthe links between delivering good care and stafffeeling supported and engaged. Patients receivea better quality of care at NHS organisationswhere staff are strongly committed to their workand involved in decision-making8,9. However, astrong link has also been found betweenwhether NHS staff report harassment, bullyingor abuse from other staff, and whether patientsreport poor care10 Not one of the trusts whosestaff reported high levels of discrimination in theNHS staff survey reported high levels of positivepatient experiences in the cancer patientexperience survey. By contrast, over half of thetrusts with the lowest levels of discriminationwere in the top 20% for patient experience11.In the NHS, patients are cared for and staffwork in the same environment. Their roles inthis environment may be different but they arebound together so closely that every contactcounts. This contact happens not just betweenstaff and patients, but also among staff whoshould treat each other as peers in providingcare. When this happens the healthcare cultureis one where care can be on an equal footingwith providing treatment.

The people behind cancer care – Patient and Staff storiesAbouT thIsreportThis report presents stories from 10 patients about a range oftheir experiences of relational care at different points of theircancer journey.It also features a series of stories that have beenbroken down into quotes from healthcare staffwho care for people living with cancer. Thesequotes provide personal insight into the goodand bad aspects of working in NHS trusts andhow these experiences can determine the qualityof care provided.The report’s emphasis on stories and personalinsight is deliberate. Capturing rich, qualitativeinsight through stories brings to life theimportance of an agenda that at times can bedifficult to qualify. That’s because the importanceof human interactions rests at its very heart.Bringing together stories from the two seeminglydistinct, ‘opposing’ sides of patients andprofessionals also highlights that the divide ismore imagined than real. Staff and patientsalike recognise that quality of care is not solelymeasured by clinical outcomes.The report includes information on howMacmillan is supporting the NHS to ensureall cancer patients are treated with the highestlevels of dignity and respect. It demonstrateswhat to do so that staff are supported todeliver this too. The common theme for thesesolutions is that relationships – between differentmembers of staff, as well as patients and staff –form the foundations of improving patient andstaff experience.Patient and staff views are presented in theirown words as much as possible.We are grateful to all the patients and staffwho told their stories.We hope this report can be used to capture thehearts and minds of NHS staff and services toooften inundated with data and action plans onhow to improve the delivery of care. These plansoften bury the ‘human face’ of the impact ofgood and bad experiences under a flood ofnumbers and statistics.5

Patient stories6

The people behind cancer care – Patient and Staff storiesFor most people, being treated with dignity and compassionis just as important as getting the best medical treatment.When people with cancer talk about their stories,certain themes are often repeated: t heir involvement in decisions about their care,and whether they were empowered to makeinformed choices and provide feedback ontheir care experienceThe following 10 stories from patientsshow how the relationships, interactionsand conversations between patients andstaff can make a difference for better orworse. All staff names have beenchanged to protect anonymity. t he quality of the communication betweenthemselves and staff, whether they feelrespected and well informed C oordinated/integrated care – whetherthey are support as they move betweendifferent care settings7

Patient storiesJohn’s storyJohn was 61 when he was diagnosed with prostate cancer in 2010.Some of the themes John’s story touches on include: good-qualitycommunication and information; caring and compassion from nurses;and being treated as an individual.For John, throughout his diagnosis andtreatment, having a nurse that he had a rapportwith and he knew he could trust was extremelyimportant to him. There were two particularnurses John felt played a crucial role in hiswellbeing throughout his treatment.8I was very angry with her. I don’t know why itseems to be the norm that you’ve gotta be angryat somebody. But she completely understood.’‘Although Sarah had been in the backgroundjust hovering and making sure we wereokay when we went in to see the consultant[for the results of the tests], I was with my wife.Unbeknown to me, my wife said the whole timeSarah was watching me like a hawk.I guess that was to see what the reaction was.Sarah took John and his wife through what theconsultant had said and explained clearly whatthe next steps would be. ‘She went through thewhole process and explained to us what it wouldmean. She told me the facts. I do need to knowthe facts – I don’t want anything dressed up.I wanted to know exactly what the score was.She went through all the tests we’d got to gothrough and that it would take time and it wasa worrying time for us.‘When the consultant told me I had cancer, thenext 15 to 20 minutes were a complete blur. Butagain my wife said Sarah was watching me allthe time. When we went out [of the consultant’soffice], Sarah took us to a side room.‘She said, “You can always give me a call ifyou need any reassurance”, which I did fromtime to time. The most important pillar ofthe journey, if you like, was having her forhelp and reassurance.

The people behind cancer care – Patient and Staff storiesTo have someone there who you can relateto and you can talk to certainly helped me onmy journey.’After his final test to check the operation hadbeen successful, John was invited by hisoncologist to take part in a trial. This involvedradiotherapy and hormone treatment whichmight reduce the chance of the cancer returning.The trial was clearly explained by Helen in thefirst instance.‘At that point Sarah explained there was a trialgoing on and I fitted the criteria. We were givenpaperwork and we went back for another chatwith the research nurse, Joy, and we agreed togo ahead it with. There was no rush, never anypressure. Although, there were some doubts inmy mind at first – did I want to go on a trial tobecome a medical lab rat? I sat down andthought what have I got to lose?‘We had the paperwork and had time to thinkabout it. The side effects were explained to usand nothing was held back. Joy was alwaysthere and I was told to give her a call wheneverI wanted to. When I went for my radiotherapy,I’d always see her and she’d ask me how I was,so again she was my point of contact.’The most important thing for John was thefeeling that both of the nurses truly cared abouthis welfare and recovery. Also, that he was neverignored by them or made to feel that they didn’thave time to speak to him. ‘They cared – youdidn’t feel you were talking to a robot. You didn’tfeel if you told them something it was going tobe ignored. They genuinely cared.’John’s only negative experiences were wheneither of the nurses he’d built a rapport withwere not there. On one occasion, during thetrial, John had a radiotherapy session andwas told to drink a litre of water. Because ofhis weak bladder, he was worried he wouldneed the toilet. When John explained thisto the radiologist and asked if the sessioncould be as quick as possible the radiologistreplied ‘I hope you’re not going to pee onthe floor.’ The radiologist’s response leftJohn feeling embarrassed. However, Johnrelayed this experience to Pat who took hisupset seriously and said she would feedbackhis poor experience.‘It’s nice to have someone to talk to face to facewho’s probably dealt with it a hundred times andseen it all before. These are the two main peoplethat got me through the journey.’‘ She said, “You can always give me a callif you need any reassurance”, which I did fromtime to time. The most important pillar of thejourney, if you like, was having her for helpand reassurance. To have someone there whoyou can relate to and you can talk to certainlyhelped me on my journey.’9

Patient storiesLyn’s storyLyn was 42 when she was diagnosedwith grade three aggressive carcinomain 2009. Her story highlights the effectuncoordinated care, lack of emotionalsupport and lack of compassion canhave on a patient.When she found a lump on her breast, Lynmade an appointment with her GP who referredher for a mammogram. It took longer than twoweeks to get an appointment due to her referralgetting lost. After the mammogram Lyn met withher consultant and was diagnosed with gradethree aggressive carcinoma.Lyn needed two operations and, for both, shedescribed the medical care as excellent, but therewas a lack of emotional support that adverselyaffected Lyn’s wellbeing. Similarly, Lyn didn’t feelsupported by the breast cancer nurse, who didnot return her calls or provide support when Lynneeded it. Lyn felt that it was the district nursesthat provided her with the emotional support sheneeded. ‘My only support that got me throughthe poor days, the chemo, the operation,everything, were my district nurses.’Two weeks after her diagnosis, Lyn was due tohave an operation to remove the lump and wasvery anxious about the operation. The operationwas scheduled for first thing in the morning. Lyndoesn’t drive and had no one who could giveher a lift to the hospital to arrive for 7am.‘When I was given the date, the surgeon I sawsaid, “It’s not a problem – you can come in thenight before surgery so you’re settled andrelaxed ready for treatment first thing the nextmorning.” The letter came and said that I had togo in the day before the procedure and that I’dgo from there up to the ward to get booked in.’10Lyn followed the letter’s instructions and went tothe ward ready to stay overnight. ‘The nurses’station was full. There were so many faces – I’llnever forget it. I leant over and said to one ofthem, “I’ve come to be booked in for surgery inthe morning.” The sister who was in charge ofthe ward said, “It’s not hospital procedure [tostay overnight], go away and come back in themorning.”‘So I said, “I’m not going anywhere – it’s beenarranged. I can’t get here in the morning.”Everyone was looking at me. I felt frightened, Ifelt belittled and I felt so uncomfortable standingthere. They realised that I wasn’t going to moveso they put me in the furthest quiet relatives’ areathat they could find, away from the patients whocould hear everything that was going on.’The person in charge of admittance came to seeLyn, apologised for what had happened andreassured her that she had been allocated a bedfor the night. However, Lyn felt that the fact shehad stood up to the sister meant she was treateddifferently by the nurses.‘I felt all the nurses weren’t particularly kind tome. When I came up from surgery, and I’d hadone of my lymph nodes removed from under myarm, so my right arm was quite limited, theymade me wriggle across from the theatre bed onto my own bed. They didn’t help me. They toldme that I would have to drink but they didn’t fillup my glass for me. They just put a jug of water

The people behind cancer care – Patient and Staff storiesand a cup there and drew the curtain and leftme to get on with it.’ The next day Lyn wasdischarged from hospital and was very relievedto go home.The majority of my worries were going on thatward with her. If I had to go to hospital now,even if it was a different ward, I’d be so fearful itwould happen again.’The surgery revealed that the cancer had spreadand that Lyn needed a second operation. Lyndidn’t want a repeat of the experience so shechecked if she could stay overnight when shereceived the letter. She was told to ring the wardthe morning she was due to go into hospital tocheck there was a bed for her. She did this andthe same sister answered the phone and said,“The only reason you were allowed to stay lasttime was because you were so rude. You will notbe coming in the night before surgery. You willcome in at seven in the morning.”When she was first diagnosed, Lyn was assigneda breast cancer nurse who met her andexplained everything that would happen. Shealso contacted Lyn a few days later to check sheunderstood everything and said Lyn couldcontact her. But when Lyn tried to contact thenurse she was never available. Even Lyn’s districtnurses tried to contact the breast cancer carenurse on Lyn’s behalf when she was really low.‘By then, I’d developed a migraine, I was violentlysick, I shook and I didn’t know what to do withmyself I was so upset. I couldn’t see how I’d getto the hospital at that time in the morning.’ Thesame person in charge of admittance apologisedand confirmed that there was a bed for Lyn.However the experience led to Lyn feeling verynervous of going into hospital. ‘I had to go in fora third operation a year later. The surgery didn’tworry me. I don’t like cannulas, I don’t likeneedles but none of that bothers me at all.‘ I felt all the nurses weren’tparticularly kind to me.When I came up fromsurgery, and I’d had one ofmy lymph nodes removedfrom under my arm, so myright arm was quite limited,they made me wriggleacross from the theatre bedon to my own bed. Theydidn’t help me.’‘I had a reaction to the chemo and the districtnurses came to take my PICC line out and I wasready to give up. They phoned her and said,“This woman needs some support – you need tophone her.” The breast cancer care nursephoned later that day to say “I understand youare not very well – I’ll see you next time you arein clinic,” and that was basically it.‘The next time I went to the clinic I was angry.If she couldn’t phone me and support me when Ineeded her I didn’t want her anywhere near me.She said, “How are you?” I told her straight Ineeded her support when I was really poorly notwhen I’d picked up the week after chemo hadgone out of my system. I don’t need her talkingto me when everything is fine. You have yourpoor period where they should be phoning youor emailing you to say “How are things today?”.When you go back for your next lot of chemo it’sthe best week in the world, you feel on top of theworld. Her response was “But I’m busy, Lyn, I’mdealing with patients.” And my response was“What am I?”’Lyn felt what would have helped her throughher journey was if more of the medicalprofessionals had viewed her as a person andsupported her. ‘They should be thinking “Thatperson has feelings,” and not just “Right, thatbody there’s got breast cancer,” “That bodythere’s got bowel cancer”. They need to think ofthe people as people and treat them as such. Ithink if you feel like you’re supported that spursyou on to recover.”11

Patient storiesDan’s storyDan was 32 when he was diagnosed withHodgkin lymphoma in 2009. His storytouches on the themes of meaningfulinvolvement and respect for his preferencesand needs and good-quality communication.However, it also includes poor experience atsome of his transition points.Dan had been working overseas and while in theUK on leave felt so poorly that he decided to seea doctor. The GP took his concerns seriouslywhich instantly left him feeling relieved thatsomeone else could also see something waswrong. The whole process of diagnosis was veryquick and, within a couple of months, when Danwas back in the UK he began his treatment.The x-ray was only a few days after the visit tothe GP. ‘The following Monday I was straight infor an x-ray to see if it was TB as that was whathe thought it could have been. I went along andhad the x-ray three days later and it would havebeen almost impossible to do it any quickerreally. I was then phoned by my own GP andasked if I could come in that day. “There is nosign of TB but there is definitely something funnygoing on in the chest area.” The fact that theradiographer picked this up meant the diagnosiswas made quickly. My GP said that he woulddefinitely not have picked this up from the x-rayand we would have gone on to do more tests.’After the diagnosis of Hodgkin lymphoma Danbegan chemotherapy at his local hospital.‘The nurses at the oncology and haematologyunit were absolutely outstanding. I can’t imaginethat any other place of treatment would havebeen any better. They were fantastic right fromthe word go. When I went in to do my consentthey explained everything to me, they map outyour treatment, every single thing.”Dan’s positive experience continued throughouthis chemotherapy treatment. ‘I was sat there for12six or seven hours at a time and I had to goevery two weeks for eight months. I actually lookforward to going. The new treatment roomopened in time for my second treatment and itwas bright and airy. And you were sat with otherpeople, some of whom had the same thing asyou so you could chat about what you’d beenthrough. It was a lovely environment, full offriendly people that were really concerned aboutmaking you better.’As well as the nice atmosphere, Dan alsoappreciated the advice the nursing staff gave him.‘They were full of practical advice and they talkedto you from a completely different perspective,which was totally what you needed. For somepeople who need a bit more support they weredefinitely there to give that. For me, we used totalk about composting and all kinds of randomstuff. They’d also talk about what

About this report 5 Patient stories 7 The link between patient and staff experience 28 Listening to staff stories 29 Empowering and valuing staff 31 How Macmillan supports empowering staff 37 Staff Wellbeing 38 How Macmillan is supporting wellbeing 43 Training for Staff 44 How Macmillan is supporting training 46 Afterword 48 References 49. 4 Every person diagnosed with cancer should have a .

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