People are asking how they can support us.

Financial donations can be made to https://localgiving.org/laurencescampaign

If you’d like to volunteer time or services, please email laurencescampaign@gmail.com

Thank you

Local to Winchester is Laurence’s Garden, a beautifully relaxed, informal garden at the foot of the South Down’s.  Laurence’s Garden is so called as it is in memory of Laurence Withey, who passed away in November 2018 following a courageous battle with a rare cancer called Rhabdomysarcoma. Laurence lived at Longwood for his short life of 21 years, with a 3 year spell at Royal Holloway University of London where, regardless of receiving chemotherapy treatment at the time, he graduated on his 21^st birthday with a 2:1 Honours in Classical Civilisations.

Between chemotherapy treatment and spells of neutropenia, Laurence enjoyed being able to spend time in the garden which is at his home on the Longwood Estate, near Owslebury.  He would when possible potter and help his mum with small jobs, entertain friends who came to see him and generally find the space ideal for reflection. He fully appreciated the therapeutic power of the garden and wished for others to be able to benefit from it too.

As such the garden is open to others seeking a quiet and reflective, natural space to remove themselves from the effects of treatment and being incapacitated. Tea, coffee and cake are served and donations welcome. Within the garden is a beautifully converted Victorian Granary offering a lovely, warm space to still enjoy the countryside from on cooler days. 

Laurence’s mum Abigail says ‘We’re hoping to register the garden with the National Garden Scheme, a Royal Horticultural Society and MacMillan shared initiative so that we can have a couple of open days per year to raise awareness and funding for cancer support. However, the garden is available all year round for people to visit, regardless of diagnosis. Everyone can benefit from it.’

Donations raised from the garden will go towards Laurence’s Campaign which aims to improve early diagnosis for Young Adults.  Abigail says ‘Laurence’s diagnosis took 3 months and when he was finally referred to Oncology services we met so many other Young Adults with the same story.’

The Campaign is already off to a great start with the support of Laurence’s University GP and Southampton University Hospital Oncology Department.  People can follow the Campaign and the garden at www.laurencescampaign.blog, FB:  @earlydiagnosisforyoungadults or Twitter:  https://twitter.com/LaurencesCampa1

To book a visit to the garden call Abigail on 01962 771441 or email laurencescampaign@gmail.com.

We will be ‘Walking with Laurence’, from his beloved home and across the beautiful countryside at the foot of the South Downs near Winchester. Please join us if you can.

Attached is Laurence’s favourite photo and one he took himself in the Summer of 2017 before he became poorly. It was taken from his favourite spot looking back at home and he kept it as his screen shot all throughout his time in hospital.

#walkwithlaurence #earlydiagnosisforyoungadults #laurencescampaign

New Years Eve 2017 and Laurence presented at A&E with full urine retention.  Following triage and an hour or so wait, I asked his symptoms be looked at urgently.  They responded and Laurence had 1700mls of urine drained from his bladder by catheter. The regular (and to be expected) questions were asked regarding sexual activity, injury etc.  No reason was found for the retention, he was catheterised and sent home during the early hours of New Year’s Day. At this point came our first re-assurance that it wouldn’t be anything serious.  The A&E doctor on duty examined him fully and referred him to urology. His appointment would be in about five weeks’ time to give his bladder muscles time to re-strengthen and try without catheter.

His first urology appointment was on 5th February 2018.  He was seen by the Urology Nurse Practitioner who did as we expected, tried without catheter (TWOC) to no avail as Laurence still couldn’t pass anything.  Again we were asked had he sustained any injuries in the past or did we have any ideas about why this had come about. May be he was simply holding on to his pee for too long before going? Laurence politely said he wasn’t and explained the pain clearly, citing it as coming from the area of his prostate.  He was re-catheterised upon which the staff nurse treating him noticed a blockage around his urethra.  This was noted as an obstruction and Laurence was offered a further appointment for a procedure called urodynamics.  Again, re-assurances were made that it would not be serious.  Still in considerable pain Laurence opted to miss out on a university educational trip to Athens to take a cancelled appointment for this investigation on the 15th February – quicker than they had expected to happen.  No stones, no infection, no answers – but still, apparently, wouldn’t be serious.  Laurence left catheterised again.  At this point further investigation through the regular channels was being prepared, but with no urgency; all in a regular time scale, the department was after all very busy. As time pressed on Laurence experienced more acute pain.  He had returned to university as he so wanted to not have to re-sit his final year. He soldiered on with friends shopping for him and giving him lifts from his house to lectures.  His pain became so bad that he found it almost unbearable to walk just between lectures on campus, and sitting in a lecture theatre very uncomfortable.  Later in February I got a call saying he’d presented at the university medical centre complaining of pain in his back and around the area of his kidneys. The university GP offered to call Laurence an ambulance and have him admitted to their local hospital A&E, but Laurence opted for me to pick him up and take him back to his local hospital where he believed, as he’d already been there would have a case history they could follow.  The university GP prepared a supporting letter for the A&E department detailing Laurence’s latest symptoms and a positive sample for urine infection that morning.  Laurence was seen again, Oramorph was not giving him any pain relief and he explained clearly the pain in his back and region of his kidneys.  Bloods were taken, urine re-sampled and showed no infection come the afternoon, and an A&E nurse said to him ‘Since when can’t a GP deal with a kidney infection?’.  Laurence was ‘in luck’ apparently as there was a urologist available in A&E at this time.  The urologist came to the cubicle Laurence was in and without even drawing the curtain, said to me ‘It will be stones’.  I explained that Urodynamics had already been done and as far as I understood no stones were found.  Now drawing back the curtain to meet Laurence, he said he could put him forward for a CT scan, and he could request it be on the 2 week fast track – however, it wouldn’t be serious and probably the wait for the scan would be more like 4 weeks.

Another night of excruciating pain and the next morning Laurence and I visited his local GP during a drop in clinic.  She re-tested Laurence’s urine and found it is was positive for infection, as it had been 24 hours earlier.  She was not happy with the blood results taken at A&E the previous day, and said she could see Laurence ‘isn’t the kind of young man to be making this up’. Upon sending him to pathology for further blood tests there and then, she also advised me to chase up the urology department to speed along the CT scan – something she as a GP couldn’t do as it was not ‘etiquette’. 

While Laurence was having his bloods taken I rang the Urology Nurse Practitioner to explain the latest developments and request the CT scan be brought forward – apparently something the Nurse Practitioner couldn’t do because it wasn’t her department/place to pressure them and she wouldn’t be able to have any sway over them.

The pain continued and Laurence’s blood results were returned to his local GP who called me to explain she’d requested – indeed had to apply pressure – for Laurence to be admitted as an in-patient and further tests to be run, alongside having him CT scanned ASAP.  Laurence and I literally couldn’t wait to get there and we arrived by 07.30am the next morning, desperate to ensure he got booked in for a scan that day -and he did.  By this point Laurence was now completely constipated as well as still catheterised and his pain was still not being touched by Oramorph.  The scan results showed him to be extremely constipated and there was blood in his bladder making it difficult to see, so probably another attempt at taking a look at it with him sedated was needed.  He was given a number of enemas and allowed home the next evening.

Another appalling night of pain and by 12 noon the next day I had taken him back to A&E.  The triage nurse acknowledged in words that it had been a failed discharge, but whether or not it was noted as such I don’t know. Being a Sunday the A&E doctor on duty called the Urology consultant on call who agreed to admit Laurence and see him the next morning.  Three further days went by with Laurence’s pain worsening and him literally screaming out in agony.  One morning during a ward round by the duty consultant Laurence let out his frustration – why had his notes not been consistent, why were some missing between A&E and the ward, and what was yet known of what was actually wrong with him? The Consultant’s response was Laurence had some blood in his urine, the pain should be bearable and that he was going to be discharged again that day.

At this point I felt beyond despair and consulted our local GP who couldn’t intervene as Laurence was under the care of the hospital, however she explained I could refuse his discharge.  I did so and also contacted the Patient Liaison Service (PALS).

A junior doctor took the time to collate Laurence’s notes and for the first time he felt there was a full and proper track record.

Eventually bloods showed both his kidneys were failing and he was taken for a surgical procedure to fit double nephrostomies (kidney drains directly out of his back).  A combination of the pain and emotional trauma had left Laurence in a terrible state and he spent the night distraught with other patients calling the nurses to him.

I was called to meet the consultant urologist who, along with a ward sister, took me to an office. The CT scan had been reviewed and they’d this time seen a growth not previously noticed, the size of a large orange – on his prostate. It was now mid-March 2018, and it would be a further two weeks for biopsy results to be returned from the Royal Marsden.

The day of the diagnosis came around and Laurence and I were asked to meet with the urologist at 12.30.  Again, we were taken to a side room and this time two ward sisters attended.  The result of the biopsy was Rhabdomysarcoma – a rare and aggressive cancer, but none the less a cancer, that had started in his prostate.  The Urologist said ‘I’m sorry, we were looking in the wrong place’. 

At the beginning of April 2018 Laurence was transferred to the Teenage and Young Adults Unit at Southampton University Hospital where for the following 7 months he received the most outstanding treatment and care. By the time he arrived with them his tumour was deemed ‘huge’ and measured 12cms in diameter.  It had reached his pelvis and had metastasised, with spots on his lungs. 

Laurence fought a courageous 7 months battle before passing away on the 8^th November 2018.

Six months ago today I lost Laurence. My amazing son, best friend and soulmate. It’s been an absolute hellish journey this past 16 months, from the time Laurence became ill to his diagnosis,treatment,and then the deterioration in his condition until he passed away on the morning of 7th November last year. I am so grateful for everyone’s support with his campaign, he truly wanted this to happen and thanks to so many people, it is. Thank you. XXX

Experience of Care Week – Why listening to our patients’ concerns makes all the difference

Dr Gero Baiarda

In the current climate of ever decreasing funding, it is easy to forget that the NHS was established to treat people and not just their illnesses.

As an NHS GP, I admit it’s easy to become distracted by other tasks during a consultation. Our time and resources are so limited that it becomes tricky to give the patient in the room our full attention. With this in mind, the NHS is specifically targeting ‘experience of care’ for improvement.

Although good patient experience is linked with more effective treatment and disease resolution, the primary objective of the NHS remains clinical outcome. As the following case shows, this can lead to tragically unsatisfactory patient experiences.

Laurence’s Story

Laurence Withey was a popular 20-year-old Classics student. When he developed persistent abdominal pain, he returned home for further hospital investigations. Abi Withey remembers vividly being told repeatedly that her son was ‘too young’ to have a serious diagnosis and that his pain should subside in time.

Tragically, he went on to be diagnosed with a rare but now orange-sized tumour, and died seven months later. Every reassuringly dismissive remark felt poorly judged in retrospect.

Abi’s response was not to seek somebody to blame but to set up ‘Laurence’s Campaign.’ Her aim is to improve communication between young adults and medical professionals. (Read what happened at laurencescampaign.blog)

What are the obstacles?

We both recently took part in a fund-raising 24 hour Radiothon, and it was clear that Abi had already identified the constraints that hamper effective dialogue. Because of their huge influence on funding, clinical targets are still primarily aimed at treating the disease rather than the patient. The inevitable side effect is dehumanisation of healthcare.

Furthermore, although UK Universities excel at producing doctors who can make diagnoses, they spend very little time teaching us how to communicate them to patients. Clarification of complex medical concepts is an acquired skill, but as Einstein said, ‘if you can’t explain it simply, you don’t understand it well enough.’

With no incentives or time set aside for provision of a good patient experience, this fundamentally human aspect of healthcare can be forced by the wayside. I am not making excuses; I agree that it’s unacceptable.

So, how can we practically improve the Patient Experience?

Instinctively, NHS staff understand the importance of listening to patients and involving them in decisions, but it is difficult to translate these good intentions into something practical. Invariably, we resort to collecting copious patient feedback, but this usually results only in a mountain of data we have no idea how to use.

What I have found refreshing about Laurence’s Campaign is that the motivating force is a mother’s love for her son. Abi already knows what she wishes had gone better in Laurence’s case, and therefore makes not only observations based directly on her own experience but also suggestions that would have helped in his case.

Why is there sometimes a failure of communication between young adults and clinicians?

We should not forget that young adults, especially University students, are unaccustomed to looking after themselves. There is no longer a parent there to tell them that they need to seek medical advice, and they are often reluctant to access clinical care for fear of ‘wasting the doctor’s time.’

In Laurence’s case, his youth also counted against him; it’s true that we don’t expect young people to become seriously unwell, but Laurence’s case shows that something being rare does not mean it never happens. After medical reassurance, there often has to be a marked increase in symptoms before young adults will ‘bother’ the doctor again even if they remain worried.

What can be done?

Laurence’s Campaign aims to establish communication skills courses and counselling support for clinicians.

Breaking bad news takes its toll, and the natural response is to develop deliberate detachment as an act of self-preservation. This can only further hinder communication. UK doctors are not obliged to offload regularly with a counsellor as they do in the US, but access to this facility would vastly improve the patient experience.

There are also plans to provide advocates for young adults. These volunteers would accompany the uncertain to consultations with medical professionals. Just the presence of another adult is often enough to give patients confidence to ask questions that might otherwise be kept to themselves.

I often wonder why doctors do not routinely print off and hand to the patient a copy of the notes they have just written. Just this simple act is enough to expel all uncertainty about what has been said. I frequently do this for my dermatology patients so there is no doubt as to what cream is intended for where and how often.

GP surgeries are now required to have Patient Participation Groups, but young adults are a very particular subgroup. Although it is true that collaboration between the NHS and national charities helps implement patient-centric changes, it is likely that focusing on working only with registered charities may overlook the needs of young adults altogether, not to mention the invaluable contribution to be made by smaller campaign groups.

And finally…

When I began work as a GP, I hoped somewhat naively to be able to help everybody. Sadly, clinical outcome is frequently something outside my control. It is not unreasonable, however, that every patient should expect NHS staff to listen properly and treat them with dignity.

Experience of Care week serves as a reminder of what the NHS was established to achieve. Laurence’s journey was undeniably heart breaking, but it serves to remind us of exactly why ensuring a good patient experience is invaluable.