Is he dying?  We just don’t know yet….

This is a true story; use it as a case study, a reflection for your practice or refer to it as a discussion document – whatever you want to call it.  It’s long, and it is to be continued – so read it in parts.

It is about Integration of healthcare, not tech or Digital, although there are many opportunities where this could have improved communication and assessment.

It is intended to share an experience, to educate but more importantly to ask questions; of system leaders, of professionals and of families who are supporting their older relatives as they receive healthcare from either Primary, Secondary or Community services. It is not intended to criticise, but if you spot things that could have been done differently and you could influence this, then go ahead.

Part 1 – Introduction

This is the story of a patient with cancer and a long history of back pain, his family and their interactions with some of the health care system on that journey. You may wonder if the question is a strange one for a Title, but how do you answer – Is he dying? 

We are all dying and as we reach our older years, the question may get asked more frequently, depending on the circumstances, illness and prognosis.  In fact, in the NHS we actively promote and plan end of life conversations at an early stage and this approach is encouraged by carers and other advocate groups.  But it’s such a difficult thing to time it right and to ask the question of others.  Perhaps, Is he dying? is answered with a different response each time it’s asked, because each person asking it may have a different reason for asking. Or perhaps because the context has changed.  If it’s the person (patient) themselves, we have to judge why they want to know and how the reply will affect them.  The circumstances change between temporary, progressive and permanent.  Health and Care is willingly provided at the point of delivery; yet it is sometimes planned in accordance with fixed criteria, which can be more restrictive than just following guidance.  Is this what we expect as patients and how we want our healthcare to be delivered?  These things are fluid, but the system struggles to respond at the right time or with the right care.  For those of you currently planning Integrated care – this story might help your thinking. 

The story

Questions and responses

The Family

If difficult and sensitive questions are being asked by the family, there will be multiple reasons for asking.  Primarily, it’s a desire for their loved one to be removed from any current pain and suffering, but it’s also to make plans as they may live and work away.  They may wish to be present or at least try to provide or arrange the right support when needed. They want to know what is happening as much as the person themselves, probably more, so that they can help to navigate a very complex system.

The Consultant’s response

If the Consultant has a terminal diagnosis to give, what are they thinking when they reply? Do they know the patient or have they never met before?  Have they been asked to pass on news of investigations arranged by another professional or team? Just what is their remit and how do they know what others have communicated or will communicate?

It’s early in the story, but I’m starting here as its as good a place as any.  Bear with me as I weave back and forwards in time.

Here are two statements delivered on the same day in November 2018, independently from two Consultants to one patient and his daughter, about the same set of investigations and a plan for care.  One Consultant had met the patient before,  the other had not. However, they had both been asked to report, following acute investigations requested by the patient’s GP.

  1. Urologist – ‘You have cancer, you are too old to operate on and it’s likely that you would die on the operating table. We will not be changing our management plan’ – that brutally honest statement was absolutely not expected, but that how it’s was delivered none the less.  

A long stare and pause of silence ensued from the patient and his daughter, both wondering who would speak first or what to say next.  If this had been the first outpatient appointment of the day, would the next part of the journey have taken a different course?

Only 2hrs earlier that day in a different hospital 5miles away  (but provided by the same Trust), another Consultant had delivered part of the same story but with a different emphasis (both Consultants had attended a Multi Disciplinary Team -MDT that had agreed the management plan 3 weeks earlier)

2. Oncologist –  ‘Well the scan showed an abnormality in the Ureter; it also showed abnormality in your Bladder, we’ll give you some different medication, a further blast of radiotherapy and see if it helps to control the symptoms (to stop the blood in the urine and reduce the leg swelling)’.  

No mention of this being secondary cancer from primary prostate cancer diagnosed in 2010.  Much gentler and yes, delivered as continuation of ongoing care over 8 years, but the response didn’t really disclose what the problem was.  So, which was better in terms of the opening question?

Did this patient really need to see two separate Consultants to receive information about a diagnosis and planned care for the same problem and symptoms?  Why does the hospital system continue to treat people functionally by Speciality rather than once?

On the basis of the first outpatient appointment earlier that day, the patient went ahead and consented to 5 consecutive days of radiotherapy treatment and at age 84, endured the daily 80mile round trip to nearest Radiotherapy service.  All went reasonably smoothly apart from a strange reaction on day 4, resulting in a 999 call, A&E attendance for extreme rigours and discharge 5 hours later.   

The Oncologist had said to follow up in 6 weeks, a patient information leaflet was provided for a drug that was never prescribed. A blood sample form also completed and given to the patient for a PSA Blood sample that hasn’t been taken.  The patient’s daughter made notes on the outpatient appointment letters.  This felt like active treatment, and hence agreement to proceed. Should there have been more honesty from the Oncologist regarding prognosis and opportunity to reflect before asking for consent to radiotherapy?  As it turned out, the result of the radiotherapy was a positive one and it did ease some of the symptoms.

Regarding the new drug that never arrived, who’s responsibility is it to ask for this medicine if it doesn’t arrive?  How long is reasonable to wait? What happens after an outpatient appointment to ensure that prescriptions are issued and that the patient has started any new medication as prescribed by a consultant?

Eight weeks later following further deterioration, the family find out that the ‘abnormality’ is now described as a ‘pelvic mass’ (actual size still to be written down and shared, other than word ‘large’ and ‘obstructive’ in the MDT notes which would eventually follow).  If the patient had known this, would he have consented to the radiotherapy?  Would there have been a different conversation with the family?  He was quite hopeful at that time, because although he suspected it was a secondary cancer, its size and stage wasn’t known/shared and the option of ‘no treatment’ wasn’t really explored.

Part 2 – Benefit vs burden 

How can a patient make rational, pragmatic decisions about treatment options, when they don’t know their prognosis, any likely symptoms or intended benefits?  If a patient (or indeed their treating clinicians) don’t know exactly what’s wrong, or how long the disease might take to progress, or what the side effects of the various concoction of meds will deliver, how can they be advised and the right choices be made? Is it ok to say we don’t know and we are all unclear?

And if a patient doesn’t ask, how much detail should be withheld by health care professionals?  Just what is known presently, or what may (or may not) happen in future?  Also, when facts at various stages are known, how does sharing this impact on a patient’s ability to deal with the facts?  We all need hope but giving someone bad news at the wrong time can remove this entirely.  When though, does this hope become futile and the symptoms and consequences of our actions outweigh the continual search for treatment and who should guide this balancing act?  

Communication between The players

We place ourselves in the hands of multiple health care professionals, whose communication, approach and intentions vary in terms of considering the whole patient – the holy grail of a holistic approach.  The issue is how to communicate across the sectors and specialisms, in coded datasets that enable electronic sharing between organisations, but also to create a plan to inform the patient and their family. This also needs careful consideration of use of language as we move to more open sharing and transparency with patients.

Different models of care

Crudely, with no offence intended, as clearly there is much more to the interactions than is about to be suggested;

  • The Medical model – how can I help, try these tablets or treatments and come back if things don’t improve, we’ll arrange further investigations.
  • The Therapy model – whats the problem, do these exercises or use this equipment/appliance and go see your GP if they don’t work.
  • The Nursing model – I have been asked to complete some tasks,  assess and give advice; blood taking, eat, drink, move, clean, sleep – maybe a referral to the many specialist support services – continence, mobility, nutrition, podiatry, physio, OT etc.    

We hear mention of MDTs, but how are each of these models truly connected and how does the communication and coordination work? How does each professional who specialises in one area or another convey their skill and knowledge, guide their colleagues and create something individual for the patient?  

Even if the patient is the central point of contact, are they really expected to recount multiple times their understanding of events?  They are only involved in some of the discussion.  Even with the benefit of a limited shared record – history taking still forms a huge part of every contact and this repetition is tiresome for people when they are unwell or cant recollect a complex history.

So back to the case study, 

The Urologist – knows that surgery is risky, prognosis isn’t good and shares this message dispassionately with the patient in a transactional way – they won’t see this person again.

The Oncologist – has been treating the patient for 8 years so has seen the progression from Prostate to Bladder cancer.  Various ‘special medicines’ have been tried over the years to manage the cancer, some have produced horrendous side effects which were not reported back. This is because the patient wasn’t aware that they were side effects; why would he think that any medicine prescribed by the Doctor could possibly be the cause of feeling so wretched?  The patient didn’t know the hot flushes, incontinence, nausea, confusion or extreme lethargy were potentially unnecessary side effects. He assumed it was his illness and was just part of dying so never reported them back to the Consultant – he didn’t even know they were medicines prescribed by the Consultant.  He did describe to his GP on many occasions’ feelings of extreme lethargy and somewhere along the line ‘Dumping syndrome’ was mentioned – to be added to the lexicon and complexity of the symptoms and possible diagnosis over the years.

The GPs – try various pain control medication but are often at the limit of what can be safely prescribed in General Practice and are balancing these pain relief drugs with the risk of further falls, with potential digestive complications, drowsiness and other medication contraindications.  They try to tie it all together and refer to a variety of specialist services for help.  

The Parkinson’s Specialist – as part of trying to work out what was going on, they assess the deterioration in speech, speed of thought, gait, writing etc.  They conclude, ‘I don’t think you have Parkinson’s I think it’s the cyproterone and bicalutamide that’s the problem – I’d recommend that you discuss not taking them’.  Medication leaflets are read, the GP agrees, it wasn’t something they were familiar with either, but the Oncologist had prescribed to slow the progress of his prostate cancer. Was the benefit of the drugs greater than the burden of the side effects? How was this information eventually passed back to the Oncologist?

They family discuss what’s important to him in terms in terms of longevity vs quality of life and the patient chooses to stop taking the two medicines as recommended.  There is almost an immediate benefit and a return to a former life; driving, helping others, participating and enjoying living in his new Supported Independent Accommodation.  The prostate has behaved and been managed all this time – its been the back pain that has been the focus.  He fell backwards onto concrete 7 years ago, playing cricket with his Grandson.  He has been on Tramadol & paracetamol since, then after another fall suffering pelvic & rib fracture (? induced by strong pain relief) he was switched to Morphine. What has been the effect of these long term strong pain relief medicines and had they contributed to the demise?  Again, the balance is required because living with the pain was intolerable.  However, until 2 years ago, he had tolerated the pain with these medicines. He used to swim 40 lengths twice a week and attend a gym twice weekly too. He has been a fit and active man all of his adult life and regularly reported this. He was over 80 though and at what point do we start to be influenced by thoughts of natural ageing?

Then it all started to deteriorate.   Did the loss of his close cousin who he had cared for since losing his wife and the subsequent grief and bereavement also play a part?

Part 3 – Alternatives to the drugs 

The Physiotherapists (2 different services; Older Adults and Persistent Physical Pain) – they ask about activities of daily living and give a range of exercises to keep the muscles supple and maintain good balance to prevent further falls – ‘move it or lose it’ they say.  He jokes ‘I come in here on two sticks, shuffling along and can hardly stand and they give me more bloody exercises’.  He can’t wait to get back into his chair with his heated wheat bag where it’s comfortable.  He remains supple in this position but is ill when the invitation to group pain therapy comes so he declines; he is discharged from the service as he didn’t make contact to join the next session.

The Reablement team – another OT assessment, a different Physio Assessment, Care (if required) and a District Nurse arrive to carry out further assessments.  They are part of the same Community Provider as the Physios, with the same clinical system.  Surely he doesn’t need more assessing? But someone comes and watches him walk up and down the corridor to the dining room once a fortnight, with two sticks or a Zimmer frame.  Getting to the dining table independently is an unwritten condition of his residency in his Supported Living Accommodation.  He knows it’s important as he wants to remain there, so makes this a priority. But the intervention from the Reablement team was sporadic, without any plan known to him (or one that he would follow).  He may even have said don’t bother coming anymore because he doesn’t feel any benefit, ‘She just watches and follows me down the corridor’ he says.  

August – a bad month

He takes to his bed with a Urine infection and deep depression follows so he’s ‘discharged’ from the Reablement team.  He just wants to die, so he’s ‘referred’ to the District Nurse team for End of Life Care; skin integrity and pressure sore checks, continence assessment, nutrition, state of mood etc. His family are annoyed and confused at the language of ‘discharge and referral’ and the resulting delay in switching teams.  Are they not all part of the same Community team?  Why are they changing teams now at this difficult stage?  There is a ‘Hub’ to coordinate all of this and the Nurse apologises that she can’t do the pressure care/skin integrity assessment because this now done by a different team.  Should the family be encouraged to speak directly with ‘the Hub’ and give the background information to save further assessments? Although he has capacity – he’s fed up with it and and gives partial information from what he can recall.

Nevertheless, he undergoes a full Nursing assessment (again from people with access to the same clinical system).  There is a volume of pages of handwritten notes and assessments with stickers on in the Purple folder. There is more blanks though than detail as they have only been written in twice since August.  His family read them and add notes on sticky labels to share updates, but there is no evidence of them being read or care changed as a result.   Should families be encouraged to add to these records? Who do these notes belong to and what is there purpose? Are they duplicated in the clinical system and so wasting precious nursing time? Or are they for families to know what is happening? Would it be helpful if they also contained future planned visits? Then family could be present too.  But maybe that’s not always helpful?  The GP doesn’t add anything but leaves notes in his diary for the nurses and the family.

Different faces

He is visited by so many different people that they all merge into one.  His days are remarkably similar as he cant get out now and he doesn’t recall their names, they all seem to be called ‘Joanna or something’ (none of them are but that name has stuck).  They don’t seem to explain their purpose or tell him which service they are from – or if they do, he doesn’t recall and cant relay this information.  His family ask for everything to be written in the diary, so they all know who’s been and who to contact to find out the plan– but only the lady that does this is his cleaning and shopping helper, none of the professionals seem to have time or maybe because its not an official document they don’t appreciate the help this gives the family. 

Fortunately, all anticipatory ‘Death plans’ had been sensitively and fully discussed and documented with his Care Coordinator and GP in July when he was mobile, well and had clarity of thought. He also had hope that this wouldn’t be needed until sometime well into the future.  

But things had deteriorated rapidly so his GP now has the ‘preferred place of care’ chat.  He is placed on the Gold Standard Framework for Palliative care – yellow is entered in his records – weeks to live, but the family aren’t explicitly told this, although many nuanced conversations were had at the time and they all accept that it’s still unclear.  He has access to and shares his medical record so that they can all help with the coordination of care due to the multiple professionals involved, and this is where they see this information.   If he’s had any conversations with the GP about his prognosis, he doesn’t share this with his family, so they don’t discuss this entry with him either. 

‘Just in Case’ medications are prescribed and hidden in the cupboard, so that he doesn’t take them by mistake or is aware they are preparing for his end.  The family watch and wait and all rearrange their lives to be with him.  He stays in bed for three weeks, his mobility deteriorates, he becomes incontinent, he’s still in pain and the increased morphine is making him so sleepy and depressed, so the Specialist Palliative Care Nurse is called and visits.  

After a chat (not referred to as an assessment) she concludes, ‘Well, you don’t look like a dying man to me, I think this is acute back pain with depression, not cancer pain, would you be able to get to hospital to see a pain specialist?’  He replies, ‘Yes, I’ll try if you think there is hope’.  He rallies and although very wobbly, gets up next day, makes a big effort, has a shower, tries to eat.   Gradually, over three more weeks, he gets mobile again and makes his hospital appointment.  They all joke that he is Lazarus.  His family ride the upturn on the roller coaster and change their mindset back to hope.  They also have an element of professional embarrassment with their employers as he’s no longer dying and they return to work after taking some time off to be with him at what they thought was approaching the end of his life. 

September – The Pain specialist 

Six injections are given for the enduring back pain, resulting from the fall 7 years ago and really the root cause of all of the acute pain since.  He says, ‘if this fixes me, I will be both delighted and annoyed that I have lived with this all this time.’  A couple of weeks relief follow then the pain returns.  He has a follow up planned for 3 months but doesn’t make it because he’s unwell again.

Everyone carries on, trying to tempt with food that he no longer really enjoys, his teeth have decayed because he stopped brushing when he thought he was dying.  He eats only food heavily laden with sugar as nothing tastes the same or interests him – is this the drugs again?  On the positive note, he’s now considered ‘mobile and not housebound’ so the DNs stop visiting; he’s discharged from the Palliative Care Nurse caseload and he’s expected to visit his GP if poorly again.  Maybe this is why the records have no entries?  Should he have been discharged from everyone’s care though as someone who clearly is in receipt of palliative care?

He decides to drive again so the car in put back on the road and he agrees only to drive in daylight, from A to B, where he knows the roads and there is limited other traffc.  Tense and emotional family conversations are held about his safety and that of others, discussions also with the GP who suggests a Driving Assessment. They know he wont do that, but who takes away the permission to drive and remove his last hope of independence?  It’s another very difficult balance.  

Part 4 – The final progression of illness

October – His leg starts to swell.  His GP sends him for a scan – is it a Deep Vein Thrombosis?  A very thorough and proactive Advanced Nurse Practitioner arranges every investigation required to get to the bottom of the problem.  2 Ultrasound scans and an MRI scan later and that’s when the pelvic mass is discovered, but still not shared with him.  Its carefully described as a ‘soft tissue swelling’ but it’s not the Ambulatory Care team’s job to pass on the bad news, or is it?  They tell him that contact has been made with his GP, the Urology and Oncology teams and that he will be invited to an appointment in 2 weeks’ time.  The appointment takes almost 4 weeks and after many phone calls, the family receive the response, ‘we won’t be changing the management plan so it’s fine to wait the 4 weeks.  And now we’ve come full circle to the outpatient appointments at the start of the story.  

The leg swelling is secondary lymphedema due to pressure on the lymph nodes in the Pelvic region.  The District Nurses are called again and visit.  They kindly measure his leg under the table whilst he’s eating his lunch so as not to disturb him.  A garment is ordered but the prescription doesn’t make it to the surgery and needs chasing by the family and the Lymphedema Nurse. Two new stockings take over 6 weeks to arrive – they are specially manufactured and come from Germany.  He chuckles at this as he was an Engineer and worked in Germany at one point. 

Back to The Big Question

Throughout this journey, everyone is asking ‘Is he Dying?’

Someone from the Sheltered Housing Accommodation asks – ‘he may not be able to stay in this accommodation if he is – he needs to remain Independent’.  We don’t know if he is dying but it’s his home so he’s staying here for now. 

‘Does he want to know what’s wrong’, asks the GP. How can the family answer that one?  Unless someone actually says what the problem is and whats likely to happen, how can they answer on his behalf?  

On one GP visit in November, his daughter-in-law happens to be using FaceTime to chat with him when the GP arrives to prepare him for the news at the forthcoming Urology appointment.  They agree to a 3 way video call which is helpful.  Although its his usual GP who has already had the ‘death chat’, she is cautious in her conversation this time.  She knows him well and is trying to assess what he does and doesn’t know, so as not to lower his mood and him end up back in bed in despair. It’s clear today that he doesn’t want to enquire.  The daughter-in-law keeps quiet.  The GP judges that he doesn’t want to know the results of the investigations so has a separate call later with his daughter-in-law to explain.  

Some days he does want to know and talk about death, other days he doesn’t, and it depends who will hear the answer. If it’s his daughter, then no – he doesn’t really want her to know.  She’s still his little girl and he still wants to protect her; he tries to avoid her having to travel long distances to visit but she is in constant contact, trying to help with limited information.  He doesn’t care what his daughter-in-law knows, she lives locally and they have a very trusting relationship where she has helped to navigate this complex system for him for many years.  He gave permission for this whilst he and his wife were becoming frailer in 2012.   He often says, ‘there are no secrets between us’ and ‘thank god she can remember the answers’ to the many repeated questions that he is asked.  But she asks lots of questions, of him and of others which occasionally gets on his nerves.  He wishes she’d stop asking and shut up. Sometimes they gently disagree over the detail, the timeframe, the sequence and the effect.  At other times he shares his darkest thoughts with her and she doesn’t know whether to share these or not with the professionals looking after him.  He reflects, ‘how can an older person with a history so complex be expected to recount the details? So he makes long lists of events to help the next time he is asked and she isn’t there.  

Part 5 – Another year dawns

January, the leg is really becoming a problem, its painful and impeding mobility.  He tries to go out and fails, needing to be brought back to his room in a wheelchair. His family are away on holiday and the Housekeeper calls the GP who removes some of his heart medications and adds in a diuretic and an antidepressant to increase appetite as well as improve his mood.  But nobody collects the prescription so he doesn’t start until the family get back from holiday four days later.  The Lymphedema nurse helps and the stocking is put on, but he experiences more pain.  He’s convinced it’s the stocking so won’t wear it again. The second brand new one that came from Germany sits in the top drawer, unopened.   It’s the same conversation, benefits vs burden.  The GP, the Lymphedema nurse, the Specialist Palliative nurse and daughter-in-law meet to discuss priorities.  

  1. Sort pain
  2. Deal with continence
  3. Reduce oedema 
  4. Make comfortable without just making him sleep.  

Between them, they have a plan, change meds, try to sort out temporary continence products (which never arrive) but the problem rights itself after a couple of difficult days.  They swap mobile numbers to aid swift communication when needed.

The accidental Overdose

Morphine is removed and replaced by Oxycodone.  He is fully involved in the discussions, his grandson present too for extra memory power.  He has the capacity to understand and was helped to take the right dose and quantity of the new medicines. But after the family leave that evening, he ends up taking two lots of his long acting tablets (he picks up the wrong box and had forgotten that he’d already taken his evening dose) and swigs about twenty times the dose of short acting oral liquid from the bottle – the syringes too much of a faff for him (nobody knows if he was in pain) and then falls that evening.  His extra intake of medicines – by choice, confusion or forgetfulness – who knows?  He lays for a while on the floor, he’s not hurt and needs to compose himself and work out why he fell. He doesn’t press his care alarm but finally manages to get into bed then rings his family to say he’s ok, but can they visit first thing.  They go over anyway and he’s fine but tired.  He recounts this later as a stumble, ‘not a fall’.  

The next day, he’s a delight and very happy!!  Entertaining the rest of the residents, regaling with jokes, whistling Christmas carols and providing renditions of Any Dream will do… he’s back to his old self and it’s lovely.  Pain, well of course its reduced.  Mobility, he’ll have a go at anything.  His specialist Palliative Care nurse decides that although accidental, at least his pain is now managed and increased the initially prescribed dose.  The following day he’s on a downer again, he feels dreadful and does not want to eat any more.  He wants to get off this earth.  He stops eating again and goes on hunger strike.  He makes this decision with clarity of thought and with will power that is to be witnessed to be believed.

Finally, the honest conversations take place; he is considered to be at the ‘End of Life’ and ‘fast tracked’ for nursing care.  He wants to remain in his own home and the Sheltered Accommodation Organsisers agree to this willingly – he’s part of their family now too.

And so the roller coaster continues………..


Well, we aren’t really there yet and the story will continue to unfold to the end.  However, there is sufficient reading in here for anyone to think about planning and doing some of this ‘Community and End of Life care’ differently. 

I urge anyone with senior system leadership responsibility to consider the interdependencies between the independently managed services and make improvements, however small.  Please do use this case study and pick out the ‘pain points’ in the journey and strive to make it better for the next complex patient.

Digital Health – missed opportunities

As some of you may know, I try to improve patient experience and our NHS working lives through use of digital solutions. I’ve recently been on the receiving end of NHS treatment so thought I’d share the some of the missed opportunities for digital ways of working to help along the way.

The Problem

Sat morning; I found a breast lump, I wasn’t over worried as I’ve had them before, but knew this one would need checked out.

Appointment system – how much is online?

I logged onto the MyGp app to book an appointment with my GP and the next available face to face appointment was in 21 days.  The next available telephone call: 15 days.  Now, this is in a practice will full complement of GPs but with a fairly new manager who perhaps hasn’t yet got to grips with online services.  I know this, because I’ve offered to go in and help.  I’ve not received a call yet but I’m sure they have plenty of other stuff going on in the practice.

So I wait and ring on the Monday morning at 8.10am and ask for the soonest available appointment with a female GP – I’m happy to see anyone of 5 female GPs.  ‘You can have one with a male GP in the extended access session this evening’.  ‘No thank you, I really would prefer a female GP’ – I work with these people so not exactly keen to show male GP colleagues then sit opposite them in future meetings. I know they see bodies all the time, but still, I preferred to see a female GP.  This happens all the time when you work in an area where you are also a patient.  In our practice over 75% of our staff are patients, but as they have been in the same practice since they were children, they’ve sort of got used to it. Also, there isn’t anywhere else within 10mile radius.

Back to the call.  The Receptionist tells me that there are no appointments available to prebook this week and asked if I had looked online.  Of course I had, I did that first, I’m an advocate of working this way,  I spend my working day telling everyone else to download apps and book online.  So I advised her when the next available online appointments were and thought, perhaps they might want to look at that.  I probably sounded grumpy – I apologise, but shouldn’t all reception staff be aware of when the next available online appointments are?  How many reception staff actually know this information and if its fairly poor access, what can and do they do about this?  Are they empowered to make more appointments available online or is the process for doing this fraught with lack of clinical system knowledge, unclear decision making, or just no appreciation of how helpful this is for patients and may save themselves some work?  How do people like me, get over the threshold to show them these benefits?

I then explain to the receptionist (without being asked to) that I have a lump, that I think it will need seen and possibly referred and ask ‘what do I need to say or do to get an appointment this week, so that I am seen before Christmas please?’  ‘I’ll put you on the Emergency Drs list for a call this morning’. It’s not an emergency but if that’s the recommendation, I’ll go with that.

8.55am, the GP rings me back, I’m driving but I pull over and explain the problem.  I’m asked how soon can I come in, I say ‘I’m passing in the next 5 mins or I am free later this afternoon, or on 2 more days this week’.  The GP says ‘come in now’. Brilliant.  Do all patients get this offer, or is it because its a fellow female colleague, or that they are Duty Dr that morning and has the surgery blocked out for these sort of problems?  How many patients would know what to say to the Receptionist to get to this stage and how many would accept the first response of the wait?

The referral – is it really an e-referral system?

Skip a bit – on examination, ‘it’ needs a referral, GP says, ‘where would you like to be seen?’  I know this bit, so I reply  ‘soonest one-stop-shop please’.  ‘Oh, there doesn’t seem to be any sessions showing on the e-referral system so I cant book for you now, I’ll get the secretaries to fax it as a 2 week referral this morning and give you a call’ (yes, there it is for those of you who cant wait to Axe the Fax).

Do the hospitals not routinely show certain clinics on the e-referral system?  What incentives and penalties are there in the contracts between CCGs and Acute trusts to help with this?  We are being encouraged to use e-referral from General practice but what is happening in the hospitals?  As for Axe the Fax toolkit- that’s possibly the subject of a future blog on its own.

‘Great’ I say, ‘if the secretaries give me the booking reference, I’ll do it on my app’ (MyGP app allows access to e-referral system now).  ‘Erm, are you sure?  I’ll get the secretaries to fax it and call you just in case’.  This GP currently has interim Chief Clinical Information Officer responsibilities for our CCG.  I get it that they are trying to make sure nothing gets missed, so appreciate this, along with their comfort with existing ways of working.  At the same time why is there no confidence in this product or to try a different approach?  Here was a missed opportunity to see how it worked in reality, then do something about it if it didn’t work smoothly.  I’m always happy to be a guinea pig for the system, especially if it helps to improve or give confidence. Maybe it wasn’t the time or the place to suggest this on a busy Monday morning, so I didn’t offer and left expressing my appreciation for fitting me in so quickly.

Good old fashioned paper confirmation….

I didn’t receive any phone calls all week, but Thu morning, a letter arrived from Surgery (handwritten envelope, quaint but really? not even in an envelope with a window so you can see my name and address).  How many practices still handwrite envelopes?  I wonder what this costs in stationary, postage, staff time.  They have my email address and consent to contact me by text.  I resolve again to look at this in our practice to increase use of email/text/records access for confirmation purposes.  I have access to my medical records so technically I would be able to see the referral information – of course only if the GP coded it correctly (I still haven’t got free text) and the letter was created and saved in a format that was viewable in the app.   Another missed opportunity to test the system and gain confidence or feedback problems to the system.

The handwritten envelope contains my e-referral number and passwords for booking and confirmation of my appointment at 8.30am the following morning (Fri).  Wow, now that’s quick, so I rearrange my stuff for the following day. 

Now we are onto the Apps…

I have a play with the app anyway and this was theereferral screen.

Is this an app problem or a practice configuration problem – how do I know who to ask?  Will the NHS app solve all of this once the on boarding with my NHS credentials has been completed?



The appointment…(or not)

Fri morning, up early and after 1hr drive, I arrive at hospital at 8.20am.  I go to the wrong check-in desk – its never clear is it from hospital signage, and get sent onto the next desk.

‘Sorry, it seems that your appointment is cancelled, let me check.  It’s rebooked for 12th Dec’ (taking me into 3rd week since being seen).  I ask when it was cancelled and I’m told on Monday 26th; the same day as it was booked.  I might have been looking a bit unhappy at this point.  I explain that I only received confirmation yesterday and ask who I need to call to rearrange – I’m given the Breast Clinic Secretary’s number.  I can see the Breast Screening Clinic sign about 20m down the corridor and it does cross my mind to ask if I can go see someone there, but I don’t want to be pushy so I sit on the chairs a while then call the secretaries when they arrive at 9am.  I explain, receive lots of apologies, and a promise to get a call later that day.   This occurs around mid morning and I get another appointment in a week’s time.

The following day, Saturday, a letter arrives (from an outsourced mail system in Milton Keynes) advising me that my hospital appointment (for the previous day) is cancelled and to contact the booking centre to get a new date.  I don’t bother as I’ve already got a new date, but intend to call the day before anyway to save another wasted journey.  I do wonder though what system is in place to stop an appointment letter being sent after an appointment is cancelled? I know that booking confirmation texts can be sent immediately and that reminders are sent prior to the appointment, all giving the patients a chance to cancel or rearrange if things change.  I realise that I hadn’t received a confirmation text in the first place.  

Mid week, I try to access my medical records so that I can see the dates that I have had this problem previously.  There is a error with the system, so I email the system provider and I experience a bit of 3-way email/telephone ‘ping pong’ between EMIS, Patient Access and the Surgery.   It appears that the Patient Facing Services isn’t working correctly and my record isn’t being updated in any of the apps that I use.  The Surgery escalate this issue to EMIS but give me the medical details over the phone anyway after I explain why I need the information.

More letters and forms..

Another letter arrives to confirm my appointment (followed by a text message where I reply ATTEND to confirm that I will be there) and also containing a form to complete.  This form asks for all the same information that I know has already been sent to the Breast clinic, in the standard 2 week wait referral template from the GP Clinical system.  I know how much time Practices spend uploading these forms into the clinical system, archiving previous versions, ensuring that the forms auto populate with demographic and relevant medical information, then clinicians save it in the records for admin staff to send to the hospitals either in paper form or by fax, as well as storing in the e-referral system. Basically in triplicate.  I duly fill in the paper form by hand, it asks if I have had any problems previously, what medication I take and for me to draw on the picture on the boobs where my lump is.  The drawing actually looks like this.

boobsAll of this information is already contained in the referral form sent by my GP.

Roll on the clinic morning…

Arrived on time, checked in, sent to clinic, named ticked off on another list by a Health Care Assistant with a clipboard, ‘Have you got your form?’ she asks.  I go to hand it over but she asks me to give it in at the next stage.  I’m directed to another desk, where someone else checks me in by asking me for name, first line of address and asks me to take a seat.   I wonder, why aren’t there any self check in screens in hospital.  Also, if my confirmation letter had contained a unique bar code, this could have been scanned and avoided 2 separate check in steps thus creating time for people who prefer not to use self service or may need extra help.  Even better if it was linked to the original referral – No?


Now for the showy off bit…

Here’s where I try to be an active citizen taking responsibility for my own health.  So that I am prepared, I try to login to my medical records, of course I want to show people how this works in practice.  NHS WiFi is apparently available in  this hospital.  I log in with my gmail address, but I cant access any of the apps to view my records.  Is this is security policy and firewall protection?  So I end up disabling NHS WiFi and switch to 4g.  I can get through the app now, but these are my screenshots.

  Epic Failure!

I tweet a few of my mates to share my frustration.

I cant view any of the letters because they are scanned in a format that isn’t viewable.  Disillusioned with online stuff, I give up and watch Homes under the Hammer on the TV screen.  At least the rest of the walls are free from inappropriate posters.  The previous week (the day before my cancelled appointment),  I had attended the Radiotherapy dept with a relative and perhaps because I had this on my mind, everywhere I looked, there was a poster telling me how to ‘survive cancer’, or to join the ‘Living with cancer knitting & craft group’ etc.  It made me want to remove any posters we have in our GP Surgery as its right ‘in your face’ if you are living with cancer or have a suspected cancer.  Maybe hospitals and GP surgeries are not the place to bombard people generically with information booklets – what do you think?

My name is called and I’m collected by a Trainee Advanced Nurse Practitioner, who makes introductions and describes what will happen today.  Before the examination, I’m checked who I am again, then asked if I take any medication and what for.  I cant help myself at this point, ‘Don’t you get a letter from my GP with all of this information on?’  I cant see it anywhere in the cardboard folder that contains my hospital notes.  I naively expect it to be on the top of the folder.  A page of sticky labels is retrieved from the back of the folder and the clinician proceeds to stick one on each of the 3 separate pieces of paper.  A yellow A5 one – for Ultrasound referral, a white one which is the same as the one that I had given in with the picture of the boobs on and another one for mammography.  I wonder why two internal services attached to the Breast clinic need pieces of paper as further referrals?  I also know these labels aren’t discarded when a patient changes GP as we often receive letters with the wrong GP information stuck on an old label.  But someone had ‘ticked’ my GP name at the start so this person was confident to use the stickers.

The reply astounds me, ‘No, we don’t see that information and patients usually know what medication they are on, what if it was wrong in the GP system?’   Whoa – I’d hazard a guess that 80% or more of patients couldn’t accurately quote all of their generic medication names, quantity or dosage but possibly they could tell you how many a day, the colour or shape and maybe describe what they take medication for, i.e. my heart pills.   And why on earth would they think that the GP records might be less reliable than the patient?  This was a clinician in training, who is providing this training such that they are misinformed in such a way about the integrity of data held GP systems?

Best bit is still to come.  On the screen, there is an online form with drop down boxes to select from and the clinician enters my verbal confirmation to the responses that are written on the form.  None of the GP referral information seems to be available or visible in the hospital system – yet I know we have been sharing detailed care records in Cumbria between Primary, Community, Acute and Out of Hours systems since 2012.  I know this because I have sat and painstakingly explained to patients why its a good idea to share and not to opt out because they may have unfounded worries about their health information being shared with pharmaceutical industries, for profit, without consent.  Yet, why can’t this clinician see this information at the point of care and then confirm this with me, rather than ask again and go through the process of selecting drop down boxes?  I can feel my blood pressure rising.    The rubbish boob picture is there again on the screen and, wait for it, the clinician clicks on a symbol and drags it on the screen to overlay where the problem is.  I’m really struggling at this point to say nothing.  Is this the limit of the IT skill in some parts of the NHS where someone has recreated a paper form into a flat undynamic electronic version using MS Word?  I realise this is to create the electronic version of the paper form that I have drawn on and that no doubt mirrors the one that my GP drew on when creating the referral.  But really, is that the way we create an electronic record?

When I’m examined, a marker pen is used to place a + on the lump – is this not an opportunity to photograph (clearly with consent) and insert the image?  Could this have been done at the time of referral and included as an attachment by my GP?  Not with a smiling head shot obviously, that would connect the breasts to the owner (making it a bit dodgy), but a real pair of boobs with X marks the spot, rather than these child like drawings, where it feels like we are all playing pin the tail on the donkey.

Now its time for the Robing Ceremony

Next, I’m taken to the Breast screening area, where I get a changing room, a basket for my stuff (like at the swimming baths) and a cotton gown to put on.  I’m fairly rubbish at working out this sort of stuff.  I’m not sure which way on it goes, the kind nurse tells me how to do it and apologises for the quality of the garment, explaining that they had lovely plush dressing gowns, but that didn’t make it back from laundry.  It’s a good job I haven’t got large boobs as the gape was right in the chest area.  After I had fiddled with the ties, she tells me that they fasten on the men’s side – I didn’t even know there was a gender side for fastenings but clearly that’s why I was confused after years of conditioning with ties on the left, not right. 

The following procedures…

I could not fault the next steps.  The whole team worked quickly and with empathy and care.  The Radiographer was adept and very gently moved me to the right position for the mammogram and chatted to put me at ease.  The Breast care nurse asked me what I did for a job, how far I had travelled, then apologised on behalf of the service for not hosting this nearer to home and also for the Receptionist at the first appointment who hadn’t thought it necessary to check if they could squeeze me in after the cancellation.  The ultrasound confirmed the lump as a nice 2-3cm cyst.  The Radiologist went ahead and aspirated, producing lovely green gunk (how on earth does that form inside your boob?), requiring no further investigation so I was discharged.  I asked a few questions which were answered honestly and competently.  Clearly, they are good at the clinical stuff.  

After I was all finished, I found this on the wall in a different changing room and it made me chuckle.

What a great idea, maybe make it into a video and play it on a screen instead of daytime TV.