Holly

This Beautiful young woman called ‘Holly Butcher’ posted her advice to the world  24 hours before she died of cancer.

This was her message for you…

“It’s a strange thing to realise and accept your mortality at 26 years young. It’s just one of those things you ignore. The days tick by and you just expect they will keep on coming; Until the unexpected happens. I always imagined myself growing old, wrinkled and grey- most likely caused by the beautiful family (lots of kiddies) I planned on building with the love of my life. I want that so bad it hurts.

That’s the thing about life; It is fragile, precious and unpredictable and each day is a gift, not a given right.

I’m 27 now. I don’t want to go. I love my life. I am happy.. I owe that to my loved ones. But the control is out of my hands.

I haven’t started this ‘note before I die’ so that death is feared – I like the fact that we are mostly ignorant to it’s inevitability.. Except when I want to talk about it and it is treated like a ‘taboo’ topic that will never happen to any of us.. That’s been a bit tough. I just want people to stop worrying so much about the small, meaningless stresses in life and try to remember that we all have the same fate after it all so do what you can to make your time feel worthy and great, minus the bullsh*t.

I have dropped lots of my thoughts below as I have had a lot of time to ponder life these last few months. Of course it’s the middle of the night when these random things pop in my head most!

1) Those times you are whinging about ridiculous things (something I have noticed so much these past few months), just think about someone who is really facing a problem. Be grateful for your minor issue and get over it. It’s okay to acknowledge that something is annoying but try not to carry on about it and negatively effect other people’s days.

2) Once you do that, get out there and take a freaking big breath of that fresh Aussie air deep in your lungs, look at how blue the sky is and how green the trees are; It is so beautiful. Think how lucky you are to be able to do just that – breathe.

3) You might have got caught in bad traffic today, or had a bad sleep because your beautiful babies kept you awake, or your hairdresser cut your hair too short. Your new fake nails might have got a chip, your boobs are too small, or you have cellulite on your arse and your belly is wobbling.

Let all that shit go.. I swear you will not be thinking of those things when it is your turn to go. It is all SO insignificant when you look at life as a whole. I’m watching my body waste away right before my eyes with nothing I can do about it and all I wish for now is that I could have just one more Birthday or Christmas with my family, or just one more day with my partner and dog. Just one more.

4) I hear people complaining about how terrible work is or about how hard it is to exercise – Be grateful you are physically able to. Work and exercise may seem like such trivial things … until your body doesn’t allow you to do either of them.

I tried to live a healthy life, in fact, that was probably my major passion. Appreciate your good health and functioning body- even if it isn’t your ideal size. Look after it and embrace how amazing it is. Move it and nourish it with fresh food. Don’t obsess over it.

5) Remember there are more aspects to good health than the physical body.. work just as hard on finding your mental, emotional and spiritual happiness too. That way you might realise just how insignificant and unimportant having this stupidly portrayed perfect social media body really is.. While on this topic, delete any account that pops up on your news feeds that gives you any sense of feeling shit about yourself. Friend or not.. Be ruthless for your own well-being.

6) Be grateful for each day you don’t have pain and even the days where you are unwell with man flu, a sore back or a sprained ankle, accept it is sh*t but be thankful it isn’t life threatening and will go away.

7) Whinge less, people! .. And help each other more.

😎 Give, give, give. It is true that you gain more happiness doing things for others than doing them for yourself. I wish I did this more. Since I have been sick, I have met the most incredibly giving and kind people and been the receiver of the most thoughtful and loving words and support from my family, friends and strangers; More than I could I ever give in return. I will never forget this and will be forever grateful to all of these people.

9) It is a weird thing having money to spend at the end.. when you’re dying. It’s not a time you go out and buy material things that you usually would, like a new dress. It makes you think how silly it is that we think it is worth spending so much money on new clothes and ‘things’ in our lives.

Buy your friend something kind instead of another dress, beauty product or jewellery for that next wedding. 1. No-one cares if you wear the same thing twice 2. It feels good. Take them out for a meal, or better yet, cook them a meal. Shout their coffee. Give/ buy them a plant, a massage or a candle and tell them you love them when you give it to them.

10) Value other people’s time. Don’t keep them waiting because you are sh*t at being on time. Get ready earlier if you are one of those people and appreciate that your friends want to share their time with you, not sit by themselves, waiting on a mate. You will gain respect too! Amen sister.

11) This year, our family agreed to do no presents and despite the tree looking rather sad and empty (I nearly cracked Christmas Eve!), it was so nice because people didn’t have the pressure of shopping and the effort went into writing a nice card for each other. Plus imagine my family trying to buy me a present knowing they would probably end up with it themselves.. strange! It might seem lame but those cards mean more to me than any impulse purchase could. Mind you, it was also easier to do in our house because we had no little kiddies there. Anyway, moral of the story- presents are not needed for a meaningful Christmas. Moving on.

12) Use your money on experiences.. Or at least don’t miss out on experiences because you spent all your money on material sh*t.

13) Put in the effort to do that day trip to the beach you keep putting off. Dip your feet in the water and dig your toes in the sand. Wet your face with salt water.

14) Get amongst nature.

15) Try just enjoying and being in moments rather than capturing them through the screen of your phone. Life isn’t meant to be lived through a screen nor is it about getting the perfect photo.. enjoy the bloody moment, people! Stop trying to capture it for everyone else.

Random rhetorical question. Are those several hours you spend doing your hair and make up each day or to go out for one night really worth it? I’ve never understood this about females

🤔.

16) Get up early sometimes and listen to the birds while you watch the beautiful colours the sun makes as it rises.

17) Listen to music.. really listen. Music is therapy. Old is best.

18) Cuddle your dog. Far out, I will miss that.

19) Talk to your friends. Put down your phone. Are they doing okay?

20) Travel if it’s your desire, don’t if it’s not.

21) Work to live, don’t live to work.

Seriously, do what makes your heart feel happy.

22) Eat the cake. Zero guilt.

23) Say no to things you really don’t want to do.

24) Don’t feel pressured to do what other people might think is a fulfilling life.. you might want a mediocre life and that is so okay.

25) Tell your loved ones you love them every time you get the chance and love them with everything you have.

26) Also, remember if something is making you miserable, you do have the power to change it – in work or love or whatever it may be. Have the guts to change. You don’t know how much time you’ve got on this earth so don’t waste it being miserable. I know that is said all the time but it couldn’t be more true.

Anyway, that’s just this one young gals life advice. Take it or leave it, I don’t mind!

Oh and one last thing, if you can, do a good deed for humanity (and myself) and start regularly donating blood. It will make you feel good with the added bonus of saving lives. I feel like it is something that is so overlooked considering every donation can save 3 lives! That is a massive impact each person can have and the process really is so simple.

Blood donation (more bags than I could keep up with counting) helped keep me alive for an extra year – a year I will be forever grateful that I got to spend it here on Earth with my family, friends and dog. A year I had some of the greatest times of my life.

..’Til we meet again.

Hol

Xoxo”

 

What Matters by Ken Donaldson & Alastair McAlpine

I recognise that it is a bit cheeky of me to put my name to this as I haven’t written any of it. A few months back I was scrolling through Twitter and came upon this thread that really moved me. The messages are simple yet immensely powerful. I have therefore simply taken some screenshots from Twitter and published them here. As you can see this is by a Doctor called Alastair McAlpine who is a Palliative Paediatrician in Cape Town, South Africa. Read on…..

In Memory of Kate by @kendonaldson

Over the years compassion and kindness have been common themes on this blog and nobody encompassed them more than Kate Granger.

Kate was many things; Consultant geriatrician, campaigner, wife, aunty, MBE and patient. She was born and raised in Yorkshire and after qualifying in medicine from Edinburgh University returned there to complete her training in medicine for the elderly. She married the love of her life, Chris Pointon, in 2005 and then in 2011, at the age of 29, everything changed. After falling ill whilst on holiday in California she was diagnosed with a Sarcoma and given 12 – 18 months to live. Characteristically she decided to defy the odds and do something meaningful with the short time she had left.

I think it would be fair to say that prior to her illness Kate was a compassionate, caring and person centred clinician who inspired those around her. However her illness gave her a unique insight into how we deliver healthcare, in particular the ‘small things’ which we often forget – like introducing ourselves. It was during a hospital admission in 2013 that Kate noticed that none of the healthcare professionals dealing with her told her their names. The first person to do so, and show real care and compassion, was a porter. She reflected (and raged a little) about this and from that experience the #hellomynameis campaign was born.

#hellomynameis is a great example of a very simple idea which has the power to make a difference. It started on twitter and progressed to name badges, internet memes and finally circled the globe. During the Ebola outbreak in Western Africa those caring for the afflicted could write their name on a #hellomynameis sticker and attach it to their protective suit and thus patients would at least know the name of those tending them. Many politicians and celebrities have endorsed the project and it has been adopted in many countries around the world. I for one continue to wear my badge with pride.

We were very fortunate that Kate wrote for this blog in 2014 just prior to her visit to NHS D&G. Her blog can be read here.

Since Kate died I have read many obituaries and blogs which are far more thoughtful, and certainly more eloquent, than anything I can hope to write. I would like to quote a few of them here.

Ali Cracknell, a fellow Geriatrician and friend had this to say on the British Geriatrics Society blog:

“I always thought we would work together long term, and the thing that makes me really smile is Kate is with me more than any other person at work. Every encounter with a patient “hello my name is …”, every MDT, every meeting with a new member of the team and every morning I put on my “hello my name is” badge, she is with me, she is behind every little thing I do every day, that just makes such a difference. How could one person make a difference like that?  “#hello my name is”, is so much more than those 4 words, Kate knew that and felt it, and we all do, it is the person behind the words, the hierarchy that melts away, the patient:professional barrier that is lowered, the compassion and warmth of those words.”

Just Giving, the website through which Kate raised over £250,000, described 5 Lessons they learned from Kate. You can read them in depth here but the 5 lessons are:

1) We need to communicate
2) Always rebel
3) Remember romance
4) Make goals
5) It’s ok to talk about down days

A little more about number 3, Remember romance. Just giving had this to say about that…

“Kate and her husband Chris have set the bar high when it comes to romance. Throughout Kate’s journey, she never forgot to mention how important her partner is to her and how lucky she feels to have met her soulmate. After the diagnosis, the couple recreated their wedding day and renewed their vows. They even did their first ever date in Leeds all over again.
The duo did absolutely everything together, including competing in fundraising events.
Seeing Kate and Chris wine, dine and care for one another teaches us to never take our loved ones for granted, and to remember romance. The couple remained incredibly close and strong for the duration of Kate’s illness, and managed to maintain an amazing sense of humour in the darkest of
times. It reminds us all to reflect on how we treat our partners.”

The BMJ published a particularly touching obituary which can be read here.

I will end with a quote from Macleans, a Canadian weekly magazine…

“Jeremy, Jackie, Tasha, Lucy, Pam—Kate’s doctors and nurses had names in her blogs and Twitter feeds. Outliving expectations by three and a half years, she met her fundraising goal of £250,000 for Yorkshire Cancer Charity, encouraging doctors worldwide to say hello, as she herself said goodbye.
On July 23, 2016, on her 11th wedding anniversary, three days after meeting her fundraising target, Kate was lying in her hospice room, no longer able to swallow. Christopher opened a bottle of champagne and placed drops on Kate’s lips. Caretakers called in her other family members. At 3:50pm, after Adam and Christopher’s mother had arrived at her bedside, Kate stopped breathing. She was 34.”

 

 

Ken Donaldson is Deputy Medical Director (Acute Services) at NHS Dumfries and Galloway

All Good Things Come in 3’s (or 4’s or more?) by Phil Myers

What would Stanley make of it?

“Dear Ward 7” by Jackie Shrimpton

Dear Ward 7,

I would like to take the opportunity, afforded to me by this blog, to thank all of you on ward 7 for the care I received during my 14 day stay in June of this year. I have worked for 40 years in the NHS and all of them spent in DGRI so the thought of being an inpatient was not a terribly nice one. However there was something so special about the way I was cared for, the personal touches, the kindness, that I felt I had to put my gratitude into writing.

I became ill some years ago although at this time I did not know the severity of my illness. I had a painful right shoulder which nothing seemed to help. This got progressively worse and then about a year ago I had a brief stay in hospital with a DVT. Subsequent investigations revealed that I had breast cancer and that it had spread to my lungs and shoulder. I was devastated. Treatment commenced with radiotherapy and medications but I knew this was all ‘Palliative’. Earlier this year I became increasingly dizzy and sick and eventually had a brain scan which revealed the cancer had spread to my brain. It was now that I was admitted to ward 7.

From the moment I was admitted to ward 7 I realised I was somewhere special. The nursing staff seemed to go out of their way to make me feel comfortable, even when they were clearly busy. I have heard it said before but it can’t be said enough: at times like this it is the small things that really matter. Combing my hair to make me look nice for my family, knowing the right thing to say to cheer me up when I was down, a simple wee word here and there made all the difference. To feel that someone genuinely wants to help, to see joy in their faces when they know they have helped, means so much. One nurse said that helping me to the shower and making me feel better in myself helped her because she was not coming to me to inject something or do something to me.

I am particularly indebted to Dr Finlay. She was obviously busy and had many patients to care for but never made me feel this way. I was made to feel important and all decisions that had to be made were made with me, not for me. She went above and beyond and I viewed her as a person rather than a doctor. I didn’t feel silly when I struggled to understand, especially when my head was in a fug due to steroids. This was such a huge thing to me at the time. Thank you Dr Finlay.

It is sometimes easy to forget how being an inpatient with an illness like mine can affect your family. My two children and other family were clearly concerned but all said that seeing me in ward 7, speaking to the nurses looking after me, filled them with confidence and made the situation easier for them. My daughter said that she was overwhelmed with gratitude as she wasn’t spending time at work worrying that I wasn’t being cared for. This meant a lot to them and a lot to me.

To all the nurses, auxiliaries, therapists, domestics, doctors, porters, pharmacists, everyone on ward 7……Thank You. I am very proud to know you and have worked in the same hospital as you.

Yours,

Jackie

Kate Granger by @kendonaldson

Last week on dghealth Kate Granger told the story behind her #hellomynameis campaign and on Tuesday 23^rd June NHS D&G were delighted to welcome her to the Easterbrook Hall where she spoke to over 150 healthcare professionals.

Kate, and her husband Chris Pointon, had embarked on a two week whirlwind tour of 15 healthcare organisations around the UK to promote their campaign. We are really privileged as Dumfries was their only stop in Scotland and early on in her presentation Kate explained why. As part of her clinical attachments at medical school in Edinburgh she spent four weeks in Dumfries working with Dr Ian Hay in Elderly Care medicine. She had such a good time, and was so inspired by Ian, that she chose to specialise in Elderly Care and is now a Consultant in Yorkshire.

It is difficult to find the words to describe how humbling it was to hear Kate tell her story. She is very matter of fact about her diagnosis of terminal cancer, her journey through chemotherapy and the complications that ensued…and her prognosis. The power of a clinician seeing care “from the other side” cannot be underestimated.

 

On one occasion, after a change of ureteric stents, Kate became unwell with a fever and had to be admitted to hospital. A nurse took her history in the emergency department, as did a young doctor and another nurse administered antibiotics. She is unable to tell us their names as they never told her. In fact the nurse who gave the antibiotics didn’t even check her name band or allergy status before plugging her into a drip and starting them running – all the time talking to another colleague.

However she did remember Brian’s name. Brian was the porter who took her from the ED to the ward. He introduced himself, asked her how she was, recognised she was in pain and ensured that he pushed her bed slowly over all the bumps as to minimise her discomfort. In short he was kind. He cared. Unfortunately there were other examples of poor introductions and she found herself ‘Emotionally Reflecting’ (or as Chris pointed out ‘Whinging’) about this and decided to do something – hence #hellomynameis.

This is about more than just an introduction. It’s about effective, skilled and compassionate communication. It’s about the little things, a smile, a hand on hers, the offer of a drink. It’s about true person centred care and seeing every patient as an individual, a person. ’See me’ as Kate puts it. If when you enter a patients room you lower yourself to their level and introduce yourself with a smile then your conversation will follow a different tack than if you stand towering over them eulogising to the entourage of nameless followers at the end of the bed.

Kate is now an MBE. She has met numerous politicians (all rather keen to jump on the bandwagon!!) and celebrities and the #hellomynameis brand is now truly global. Hospitals in many countries including the USA, Australia, Italy and Sierra Leone have embraced it. The latter example is extremely powerful as, during the Ebola outbreak when clinicians were forced to be completely sealed in protective clothing, #hellomynameis stickers could be put on the visors of helmets so that patients would know the name of the doctor or nurse caring for them.

Kate’s talk was inspirational. The courage she and her husband demonstrate in touring the country telling her story time and time again is breathtaking. I know I can speak on behalf of everyone who made it to the Easterbrook by saying how proud we all were to have met Kate and Chris. While Hazel Borland and I waited for her to arrive we both confessed to some nerves at meeting this celebrity. We told Kate this and she responded “but I’m not a celebrity, I’m just a normal Yorkshire lass” and this was what came over throughout her visit. Despite everything she has been through, and all she has achieved, she remains grounded, normal and human.

Kate’s talk was recorded on video and will be available for all to watch soon.

 

#hellomynameis….Kate by @GrangerKate

Hello my name is Kate. I trained at Edinburgh University and in our later clinical years we spent time in the surrounding district general hospitals. For me this meant making the journey over to Dumfries to complete my Medicine for Older People attachment. I was obviously inspired by this placement as once qualified I subsequently chose to train in that specialty.

Everything was going perfectly with my career and indeed my life. I was happily married to my husband Chris, we had a lovely home in Yorkshire and had a fantastic network of supportive family and friends. However, in summer 2011 our lives were to take an unexpected turn and change forever.

I became acutely unwell while on holiday in California. Initial investigations in hospital showed I had acute kidney injury secondary to an obstructive uropathy. The reason for the obstruction was numerous tumours throughout my abdomen and pelvis. Incurable cancer. Out of blue. Age 29.

I’ve been through a great deal of healthcare since then and as a doctor have been a keen observer of my experiences on the other side. It has made me reflect long and hard about my own clinical practice and really think about what constitutes good care. I have come to the conclusion that those factors are really very simple; quality communication; remembering the little acts of kindness can have the biggest impact; person centred healthcare with true shared decision making and always trying to see the person behind the disease or condition.

I have written, blogged, spoken about and tweeted most of my healthcare experience to date. This led almost two years ago to #hellomynameis. It was summer 2013 and I found myself unexpectedly in hospital with post-operative sepsis after a routine stent exchange. During that admission there were a fair few problems with my care, but it was the absence of something so simple, so routine that distressed me the most. An introduction.

No matter which discipline of healthcare you train in, I’m sure that introductions are covered as an important part of interacting with patients. In Medicine we even assign marks in exams for introducing yourself properly. But somewhere along the line in some places this simple courtesy has been lost.

As an avid exponent for both healthcare improvement and social media I decided that it was just not enough to simply complain. My complaint would be politely acknowledged but nothing would change. Therefore, after an inspiring conversation with my husband, in which I was plainly told to “stop whinging and do something”, we set off on the #hellomynameis journey.

On the 31st August 2013 I tweeted:

“Going to start a ‘Hello my name is…’ campaign. Have sent Chris home to design the logo.”

Who could have guessed that would lead me on a path to being awarded an MBE for services to the NHS and improving care? The concept is incredibly simple; use the immense reach of social media to remind, encourage and inspire healthcare professionals about the importance of introductions and their place in the delivery of person-centred care.

Since that first tweet we have been working incredibly hard spreading this message as far and wide as possible. I have lost count of all the conferences I have spoken at and all the tweets I’ve sent. The #hellomynameis hashtag has made over 200 million impressions on Twitter. It has spread all over the world. Our latest enterprise is the #hellomynameis tour where in the space of one week in June we are planning to visit 15 healthcare organisations to talk to staff about our story and how the campaign was born. I’m happy and excited to say that Dumfries hospital will be a part of the tour.

I dedicate a huge amount of time and energy to raising the profile of patient experience in the healthcare agenda. I feel it is something that is sometimes not given the prominence it deserves. But that is changing and the patient voice is becoming louder and more powerful. Patients need to know who is delivering their healthcare, to build relationships with and be able to trust those people. #hellomynameis simply reminds us all of that.

Dr Kate Granger MBE is an Elderly Care Consultant in Yorkshire. She will visit NHS Dumfries and Galloway on June 23rd 2015

Kathleen’s Journey

How many of you have lost a loved one to cancer? How many of you have heard the term “he or she died peacefully”? Anyone who has witnessed a loved one dying in this way will appreciate that there is often nothing peaceful about it. It is heartbreaking, you are in fearful limbo, undergoing constant challenges and the result is painful and exhausting both physically and mentally. This may sound a little dramatic but it is an honest assessment and it was honesty which I felt was lacking in the story I wish to tell you.

At the beginning of 2014 Kathleen, my Mum, had a follow up Colonoscopy having previously had polyps. However on the day the procedure was performed there were complications and the test was abandoned. She was informed she would be recalled but sadly had not yet received this appointment at the beginning of 2015, when she died.

She became unwell during the summer of 2014; fatigue, loss of appetite and change in bowel habit. As her symptoms worsened she isolated herself socially. Her GP prescribed laxatives but they just made things worse and caused abdominal pain. I would say at this point she had no quality of life. She visited her GP and asked for more investigations but was informed that tests such as CT scans were expensive and she did not require one. This shocked us.

In November her abdomen became distended and the pain became worse. We were left with no option other than to take her to the Emergency Department. To my horror Mum was sent home with more laxatives but was so poorly had to return the next day. Once again they wished to discharge her but my dad stuck to his guns and insisted on admission. She had a number of tests and on the following Tuesday a CT of her abdomen. This revealed bowel and ovarian cancer. 

When Dad was asked by the Consultant to be present when he gave Mum the results he knew it was going to be bad. The Consultant informed them that the cancer had spread and that Mum only had weeks to live. There was no treatment to offer. There is no skirting around news like that. It was devastating but we were grateful that it was delivered with humanity, compassion and honesty. You don’t forget these things. As a family were reeling. The grandchildren were heartbroken and we all struggled to come to terms with the news. And then…..

A few days later another doctor came and told us the CT results were ‘inconclusive’. This news was delivered with a flippancy and obvious lack of understanding to how we all felt. We were then told that it would be over a week until we knew what the plan was as we needed to wait for a multidisciplinary meeting. This was almost too much but we clung to the hope now presented to us. Maybe….

Then we were told that there was no curative treatment but there was an option of palliative chemotherapy which MAY shrink the tumours. They offered 6 months of chemo which sounded hopeful and Mum went up to Edinburgh. However after the first course she suffered a perforated bowel, apparently as a result of the chemo, and was admitted to the palliative care unit. She was now asked what she wanted and discussion turned to the funeral!

Why was my Mothers final 6 months such a roller coaster? Why did it take so long to diagnose her? The end result would most likely have been the same but did she have to go through so much pain and confusion? I understand that an administrative error led to Mum not getting her follow up colonoscopy. This is inexcusable but when she became truly ill no-one seemed to listen to her. Listen to her symptoms, listen to her story. Had an individual healthcare professional actually listened to Mum or Dad and taken them seriously then I have no doubt she would have at least had her scan and diagnosis earlier.

And then all the confusion about “was it cancer or was it not?” It clearly was and the first Consultant we saw was clear about this and, not only did he honestly tell us the news and prognosis, he was right: she only had a few weeks left. A few weeks that could have been much kinder had she not been given false hope and a worthless (and uncomfortable) trip to Edinburgh. It was only when she got to the palliative care unit that they asked….What matters to You?

That is all it required….someone to listen and honesty.

Mum died in the palliative care unit well cared for and in dignity. The staff were honest and kind. They listened to her needs and provided them. We are very grateful to them and their professionalism.

This week’s blogger wishes to remain anonymous

Quality and the dreaded hospital appointment by Martin Keith

Along with hundreds of other people my wife had a new outpatients appointment in October. “Big deal” I hear you say “so did my husband” but unfortunately my wife has severe long-term health problems and for us this was a challenge we were not particularly looking forward to. As she is housebound, confined to an electric wheelchair, intolerant of any noise and unable to stand for more than 30 seconds even a simple appointment is an expedition of Herculean proportions.

However rather surprisingly and to our great pleasure the whole visit to DGRI was a fairly simple and stress free experience. I had arranged for a quiet room in the department for my wife to wait for her appointment and we asked the departments she was visiting if they could phone when they were ready so we didn’t have to wait around in noisy waiting rooms. All the staff we came into contact with were as helpful as they could be and did everything they could to make the experience as easy as possible for my wife. Although it may at times only have been little things or minor changes to normal practice they made my wife feel more comfortable so to her they mattered and were appreciated. I’ll put my hands up here and admit that the fact I work in DGRI helped as I had the knowledge of the building and the services my wife would need to access. However you do wonder how many other patients have a less than pleasant experience when visiting the hospital simply because people were unaware of their needs or the challenges they faced getting to hospital in the first place. So how do we measure the quality of the services we deliver to our patients?

At the end of 2004 the NHS Dumfries and Galloway decided in their wisdom that I was the ideal candidate to be sent on a 3 year BSC Adult Nursing secondment at what was then Bell College. At the time I was working in IT as an Information Officer producing exciting reports on bed occupancy, waiting times and other information requests.   So I headed off to college for 3 years of hard work, extensive study, long holidays and copious drinking and quickly realised that for much of the last 5 years I had been producing work that whilst accurate was actually fairly one-dimensional in the great scheme of things (and fairly useless a lot of the time). Numbers matter but they don’t tell the full story; for example in my previous job I had been asked to provide information on a ward’s workload as the ward involved claimed their workload had massively increased. The data did not show a change in admissions, discharges and length of stay for patients in that ward over a 2 year period so on paper the workload had not increased. However due to a change in the patients admitted to the ward the amount of time required to deal with each patient had increased thereby increasing the workload considerably. I learnt how hard work a shift on this ward was as a student and since then have been very aware of the one dimensional nature of data and how it only tells part of the story.

Whilst I found nursing very stimulating and enjoyable in a challenging way a change in supplier of hospital soap led to my hands starting to bleed and crack hideously. For some reason there was a feeling that my ability to bleed spontaneously was not really necessary for a career in nursing, in fact it was positively discouraged and so this led to another change in career and I washed up in Cancer Services doing cancer audit work, ie back to the data I’d hoped I’d escaped 5 years earlier. It quickly came apparent I was back to where I started, “counting procedures” rather than the measuring the “quality of the procedure”. It was also clear that the clinical standards we were being measured against were “voluntary” so there was no sanction for not collecting the data and no requirement to publish it openly so patients and other health professionals could review it.   Then in 2012 everything changed with the introduction of the Quality Performance Indicator for Cancer.

“Better Cancer Care, An Action Plan” published by the Scottish Government in 2008 detailed the new strategy for measuring cancer quality across all of Scotland’s Health Boards Specifically the government committed to the following

“By 2010, all of Scotland’s tumour-specific networks will take part in national audit that will enable an ongoing programme of improvements to clinical practice, based on national indicators which allow benchmarking against other countries’ approaches”

As is often the case it was actually 2012 by the time we started collecting data using the new national audit framework. The significant difference between the QPI’s and the old clinical standards is that the collection and publication of data is mandatory and all the data collected will be available on the internet for all to view. In addition they have been developed by clinical, managerial and support staff working on a daily basis with and supporting cancer patients to ensure they are relevant to the clinical teams delivering care. However it was noted at a high level that in many cases we were still collecting data to ensure protocols had been followed rather than looking at the individual. Therefore the “Cancer Patient Experience Quality Performance Indicators” were born (to download any of the cancer QPI’s please click here)

Initially 3 Patient Experience QPI’s have been developed each dealing with a different area of the patient journey

QPI 1 Communication – Patients should experience excellent communication from healthcare professionals throughout their cancer care.

QPI 2 Information Provision – Patients should experience excellent information provision from healthcare professionals throughout their cancer care.

QPI 3 Shared Decision Making – Patients are empowered by healthcare professionals to share decisions about their care and treatment

Ok it won’t change the world but at least now the patient is at the centre of our audit work and we will have to ask them what they think of our service and we will have to share the results, warts and all, with all who want them. We are also still collecting an awful lot of data on procedures to ensure that clinically our patients receive the correct diagnostic tests and the appropriate treatments. So going forward in cancer we will be looking at the “whole picture” rather than just the medical side of the patient’s journey which will hopefully lead to improvements in the whole patient experience.

So for those who have managed to stay awake till this point we are back to where we started, how exactly do we measure the quality of a hospital appointment? I hope that the work that has been accomplished in cancer will eventually feed into other services with the same proviso that data collection and open reporting are mandatory. I also hope it actually makes a difference in the long term and we do see actual improvements in patient care and this does not just become a “tick-box” exercise. Whilst gathering data on the patient experience is very time consuming and surprisingly challenging it matters. Everyone reading this will at some point, either personally or through family members and friends, be affected by cancer. By concentrating on the individual and the quality of care they receive it is hoped that the QPI programme will mean that everyone will get not only the highest standards of medical care but also feel a welcome participant throughout their illness rather than a number.  

 Martin Keith is a Cancer Improvement Officer at NHS Dumfries and galloway

 

 

 

 

 

 

The Cancer Police by the Cancer Waiting Times Team

We are sure far too many of you have heard the dreaded phrase “We are tracking this patient who has been referred in as Urgent Suspicion of cancer”. It seems as cancer trackers we have a reputation for asking too many questions and it must sometimes feel as if we are constantly asking for outcomes and updates on patients. We ask for clinics, tests, treatments to be booked so patients can progress through from their referral, to diagnosis, to treatment as safely and as timely as possible. For each type of cancer we have developed a pathway that each patient should follow, unfortunately we only have 62 days to complete this pathway regardless of the intended treatment. This means that any delays can have a major effect on the next step in the patient’s pathway. We understand that everyone is busy and it must feel sometimes that we are jumping the queue or pushing in with patients, but we have a responsibility to ensure that all these patients are meeting this national target.

We track the cancer patients through the healthcare system from urgent suspicion of cancer referral (USOC) to first treatment and do our best to ensure we meet the Government standards of 62 days for a patient’s referral to treatment and 31 days from decision to treat to treatment. Please don’t stop reading, we understand Government standards/targets can be seen to be divisive or box ticking exercises but if it was your friend or relative that possibly had cancer wouldn’t you want them to be diagnosed and treated as quickly as possible. The Government has helpfully provided a diagram to illustrate this target

So do cancer waiting times really matter in the great scheme of things? The Government states that, “the links between specific waiting times targets and better outcomes in terms of long-term survival are generally unclear. However, there is no doubt that waiting times are closely linked with increased anxiety and concern for patients and their families”.   At the last Scottish Election waiting times for cancer treatment were shown in opinion polls to be among the top 3 concerns of the Scottish voter so they certainly matter to the public.

Unusually for a NHS standard the majority of suspected cancer patients that we start to track will not have cancer and will not be reported to the Government. It is fantastic news for all concerned when a patient is found to not have cancer but and it is a very, very small “but” this can lead to questions of why are you tracking patients that don’t have cancer? It’s tricky to explain and it reminds us of Donald Rumsfeld’s infamous quote “Reports that say that something hasn’t happened are always interesting to me, because as we know, there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns — the ones we don’t know we don’t know”. Hopefully, we can do a better job of explaining it than Donald Rumsfeld but basically we have to track all patients referred as urgent suspicion of cancer from referral to either having the all clear after diagnostic tests or to first treatment i.e. we don’t know until test results are through if a patient has cancer but the clock for the standard has already started counting. Sorry we are beginning to sound like Mr. Rumsfeld but you get the idea, in our job it’s a mix of “known unknowns” and “unknown unknowns” which certainly keeps us on our toes. As you can see from the chart below we receive a lot of referrals that need tracking but not that many of them are cancers. Overall about 15% of the patients we track will have cancer so the key for successful cancer tracking is to identify those patients with cancer as early as possible.

As NHS employees we all want the best for our patients and we can do this by ensuring we have systems that deliver safe and timely patient appointments, results, clinic outcomes and treatments for everyone. NHS Dumfries and Galloway is a large organisation and the cancer standard is one of many standards. It can be tricky to keep abreast of the different targets and standards but we need everyone who is helping with a cancer patient’s pathway to be aware of the standard and that the Cancer Police will be continuing to track and progress patients. If we focus on delivering a quality patient focused service we will meet this standard and others as a matter of course and may be in the not too distant future there will be no need for the Cancer Police as we will always be reporting how standards and patient expectations have been surpassed.

The Cancer waiting times team are Christine McDowall, Barry Turner and Megan Thomson who all work at NHS Dumfries and Galloway.