Chapter 1

Sample passage from Under The Skin: My Fight To Save The NHS

I was having a bad day. I knew the clinic would be overbooked
and running late, but as I made my way through the hospital
corridors of Ysbyty Gwynedd, a district general hospital in North
Wales, reflecting on the discussions at our morning management
meeting, I wondered how things had got this bad. The busy
clinic was symptomatic of the dangerously high level of demand.
The dermatology patients shared a waiting area with cardiology
and it was standing room only on this particular afternoon at
1:45 p.m. It had been raining all morning and the air was humid
and stuffy. These clinics had a mixed demographic: poverty
mixed with wealth, and a light sprinkling of UK and international
students. All ages were represented too, from babies to the
elderly and infirm. It would be a long afternoon.

‘Pnawn da i chi!’ (‘Good afternoon to you!’) I greeted the
nurses and doctors who were milling around in the corridor
outside the clinic rooms as I made my way to my room.

I logged onto the computer and loaded a fresh tape into my
dictaphone. I glanced at the clinic list. There were six patients in
the urgent suspected cancer category, four new urgent referrals,
six new routine referrals and eight follow-up patients. Despite
the computers on our desks and dermatoscopes (hand-held,
illuminated magnification devices to permit high resolution
imaging of the skin) in our hands, the ritual of the clinic had
changed little in fifty years.

‘Are you ready to start?’ asked Mrs Hughes, my nurse for
the afternoon.

‘As ready as I ever will be. Who’s first?’

She handed me a set of notes.

The first patient, a fifty-three-year-old woman, was shown in
and sat next to me at my desk. She was anxious, having received
an appointment on the urgent suspected cancer pathway. This is
a fast track where patients are seen within two weeks of receipt
of the GP referral. She was worried about a skin lesion on her
back which had recently become itchy and sore. It turned out to
be a benign skin lesion with no features to suggest skin cancer.
Reassurance from me and smiles all round.

‘I hope I haven’t wasted your time, doctor?’

The next patient was a twenty-one-year-old university student
with a long-standing mole on his arm. He was in cotton athletic
clothing and had been soaked by the rain. His GP had spotted
the mole when he was being seen for something else, and
opted to refer him to have it checked. Again, he was attending
within a few days of seeing his GP via the skin cancer fast track.
There were no worrying or sinister features, and no suggestion
of skin cancer. It was a small, benign birthmark. I checked it
carefully with the dermatoscope and measured it with a ruler.
Reassurance from me, but no smiles this time from a typically
grumpy student whose breath smelt stale, perhaps still hungover
from the night before.

The third patient was a woman of eighty-nine who attended
with two of her daughters. They had travelled by car from
Blaenau Ffestiniog, thirty-six miles away in the heart of
Snowdonia. One daughter had taken the day off work; the other
was not working, but came anyway. This was a referral to check
multiple pigmented lesions on her back. Again, she had been
referred by her GP on the skin cancer fast track. I took my time,
respectful and solicitous to this elderly woman.

‘Her first language is Welsh, and her English is a bit rusty,’
one daughter told me.

‘…And she’s getting a bit forgetful,’ added the other.

I carefully checked the skin on her back and chest. There
were multiple black and brown pigmented lesions, all showing
the typical features of seborrhoeic keratoses, or ‘age spots’.
Again, it was reassurance and smiles. However, this time they
did not get up to leave. ‘While we’re here, doctor…’ I duly
checked the second skin problem, a mild form of eczema seen
in the elderly, where the outer layers of the skin become dry and
cracked creating a lattice-like pattern of eczema on the legs. I
wrote a prescription for a moisturising cream and a moderately
potent steroid cream.

‘Diolch yn fawr iawn,’ a daughter said as they were leaving
(‘Thank you very much’).

And so it went on. Patient after patient with not too much
wrong with them. Nice in a way, but frustrating too. These cases
should never have been fast-tracked to the head of the queue, but
that was how the system was set up. The GPs who had referred
them were doing their best with their limited knowledge and
even more limited training. They were terrified of missing
something serious, and were practicing what’s commonly
referred to as defensive medicine. How British to be concerned
about wasting my time, how typical of NHS patients.

Perhaps they did not recognise that their appointment had
consumed far more of their time than mine: the half day travelling
to the hospital; the time spent driving round and round
searching for a parking place; walking from their car to the
outpatient department; queuing to be checked into the clinic;
waiting in the waiting room; being seen by the doctor; walking
back to their car; driving home. For me it was just a few minutes
in the clinic.

‘Better safe than sorry.’ I did my best to reassure them, and
confirm that it was always best to check these things if they or
their GP were concerned.

The next patient, Rhiannon, a fifteen-year-old girl with
bad acne, was being teased at school. She attended with
her mother and they had travelled about twenty-five miles
from Holyhead. Rhiannon had been on antibiotics for nearly
three years. They had waited patiently for this appointment;
despite me upgrading from ‘routine’ to ‘urgent’ on reading
the referral letter it was still a four-month wait (a routine
appointment would have involved a twelve-month wait). I
examined her skin, trying to conceal my concern. I could see
that this was severe inflammatory acne with scarring, visible
through the thickly applied make-up. The treatment I was
planning would be a game-changer. If Rhiannon had been
referred earlier, there would likely have been less scarring. I
tried to be upbeat and positive as I explained about the benefits
of Roaccutane.

Next up was Meinir, a twenty-three-year-old with psoriasis.
It was involving her scalp, elbows, knees and genital skin.
I asked her to complete a ten-item quality of life questionnaire.
Her score was much higher than I was expecting, telling me that
her skin disease was having a big impact on her quality of life.

‘What is the main issue?’ I asked.

‘It is too painful and embarrassing to have sex,’ she replied.

I looked at the priority and date of her GP referral letter:
‘routine’, but then upgraded by me to ‘urgent’. She too had
waited four months to be seen. Meinir had considered going
private, but couldn’t afford it.

The next patient had been added as an ‘extra’. The GP had
phoned me a few days earlier, and had threatened to send the
patient in for admission to a medical ward. I agreed to see him
in clinic later in the same week. Gwion was aged seventeen, and
had suffered with eczema since infancy. He had been seen by us
a couple of times in the past, yet still had very little idea about
how to self-manage his eczema. It was now dominating his life,
always itchy, always distressing, and stopping him from sleeping.
He scratched his skin vigorously throughout the consultation,
even when talking to me and whilst I examined his skin. There
was no respite.

‘How does it feel to scratch your skin like that?’ I said.

He looked surprised by the question. Eye contact told him I
already knew the answer. He realised that lying would be pointless.

‘Actually… it feels great! It’s the best feeling ever, but I know
I shouldn’t do it. If I keep going, I end up in a frenzy and
scratch myself harder and harder until my skin bleeds. It still
feels nice to scratch, even then.’

A nod of recognition from me,
to acknowledge that I fully understood what he was saying,
without being judgemental or critical.

Nearing the end of the clinic, it was time to see the review
patients, all of whom I knew. I apologised to each in turn for
the clinic running so late. They were used to it; this clinic
always ran late. They knew it and tried not to get too stressed.
However, most of these patients had severe and complex skin
diseases, requiring treatment with potent drugs targeted at the
immune system. This was hardly the best way to treat our most
needy and vulnerable patients. It felt too rushed making decisions
that were hasty and expedient rather than appropriate and
well-considered.

The first follow-up had a rare autoimmune blistering disease
(a disease where the body’s immune system attacks the skin and
creates inflammation and blisters) which had failed to respond
to dapsone, the drug of first choice. There were now three
different treatment options to consider, which meant delaying
a decision until the patient had a chance to read the relevant
patient information leaflets, and give it some thought. However,
he wanted to avoid another clinic appointment and was keen to
start something today. I knew that this was reverting back to
paternalistic medicine, with me making the decisions, and the
patient trusting my judgement. He seemed to have made up
his mind, so I went along with his wishes and started him on
a new tablet.

Next in was a patient who had recently started a new therapy
for his bad psoriasis. He had completed sixteen weeks of treatment
with adalimumab via self-administered injections to the
anterior thigh or tummy, once every two weeks.

‘How is it going?’ I said as he came in and sat down.

‘Brilliant,’ he said. ‘It’s all cleared up.’

‘Any side effects or problems?’

‘No. The injections sting a bit, but I can cope with that.’

He stripped off in the examination room so I could see his
skin for myself. He had a tiny area of psoriasis on his left shin, but
was otherwise clear. I had never seen his skin normal-looking
like this. He completed the quality of life questionnaire. I
informed him that he was now eligible for long-term treatment
with this drug. He went out smiling, no longer handicapped
by bad skin disease.

Next in was a female patient of thirty-one years with bad
eczema. She had recently started an immune-suppressant drug
in the hope of improving her symptoms. I knew her well, having
seen her in clinic on many occasions.

‘How’s it going, Rachel?’ I asked.

‘I couldn’t cope with those capsules. You warned me about
their funny smell and huge size; I could just about swallow them
without gagging. However, a few hours after starting them I
developed a thumping headache. I stopped them and tried again
a few days later. Again, I woke the next day with a bad headache.
So, I stopped taking them. My eczema is still awful.’

We discussed the treatment options. I told Rachel about
dupilumab, a new injection for eczema which had recently
become available. I explained that these were self-administered
injections, every two weeks. They were very effective and safe,
with a low incidence of side effects. I explained how she could
obtain more information, and we agreed to meet again in two
weeks to discuss it in more detail. She was visibly relieved to be
leaving the clinic with a plan, and seemed excited to be considering
a novel new treatment.

At the end of the clinic were patients from the end of the
‘routine’ waiting list.

The first patient had been waiting for twelve months (more
than twelve months means they would breach the waiting list
limits set by Wales NHS; our service ran at the limits); in frustration,
he had been to see a dermatologist privately. The problem
had been sorted out, but he now had another skin problem, so had
decided to keep the appointment anyway.

And there was the patient with a skin disease which had lasted
for a few months, but was now better. He kept the appointment
to seek advice on what he should do if the rash came back.
There was also the thirty-seven-year-old woman with a mole
on her face which was unsightly. The GP had said in the referral
letter that it had changed slightly in appearance; by the time she
attended clinic twelve months later she forgot to mention this; the
only issue was to have it removed because she felt that it was ugly.

I apologised: ‘We are not allowed to do procedures for
cosmetic reasons.’

‘Then why did you make me wait more than a year to be
seen?’ she asked.

It was a good question. She had waited for twelve months,
and taken a day off work to attend this appointment, only to
find out something she could have been told at the outset. She
argued strongly to have it done, but I stuck to the line. She left
in a huff, slamming the door behind her.

And finally, the patient with a skin lesion the GP thought
was benign, but wanted it looked at anyway. Again, it had been
a twelve-month wait for this fifty-five-year-old woman on the
routine waiting list. In that time, the lesion had slowly changed
in appearance, becoming larger and more irregular. She was a
busy, cheerful, outgoing woman, who had made light of this
lesion. I examined it with my dermatoscope, fearing the worst.
Sure enough, there were a number of worrying features. I
suspected a malignant melanoma, a serious form of skin cancer
which kills more than 6,000 people per year in the UK. I
explained what I thought was the diagnosis, and made arrangements
for excision of this lesion a few days later.

• • •

Clinic over, I drove through the landscape which plunges
into the sea between Bangor and Llandudno. The road clung
precariously to the side of the mountains before disappearing
into long brightly lit tunnels, giving me time to reflect
on my day. The service we were providing was a shambles.

Why did managers think that by just about coping with the
high volume of referrals, with no breaches, we were providing
a good quality service? Just because the waiting times had not
breached the stipulated maximum wait permitted in national
waiting list targets did not mean there wasn’t a crisis. Nor was
there any talk of how we might improve the service. I hated
this acceptance of a poorly performing service. I was sure we
could do better.

‘How was your day?’ said my wife, Sarah, that evening at supper.
She could see there was something on my mind.

‘Our dermatology service is failing, but no one seems
concerned about it. One of the managers even said to me, “It
has always been like this,” and shrugged.’

Then I told Sarah about the afternoon clinic.

‘That bad, eh?’ she said. ‘So do something about it.’

I slept badly for the next few nights as I mulled over our
situation.

The poor lady with a suspected melanoma who had been
hidden in plain sight on our routine waiting list for the last
twelve months was just the tip of the iceberg.

Enough was enough.

• • •

A few weeks later, I set myself a challenge. A big part of the
problem was that our interactions with the GPs were so poor.
Almost exclusively by letter, these referrals and responses typically
took weeks or months even for a single exchange of letters.
In every department I’d worked in, the system was the same.
Referral letters from GPs were divided by consultants according
to three categories: ‘urgent suspected cancers’; ‘urgent’; ‘routine’.
This created three large piles of letters.

I had never questioned this; it had been a constant throughout
my career. However, as our service was clearly failing, I
needed to give it more thought.

The next question was about the old-style three-category
prioritisation process: how did this work in practice for the
patients in each group?

My diary entry for that day was:
Started with ‘urgent suspected cancers’ (USC). Looked through the
USC referrals, each on the characteristic yellow paper we used to
make them stand out from more mundane referrals. Only three
out of eighteen had been correctly referred on this pathway. Worse
than expected! However, not necessarily the fault of the GPs; few of
them have had proper training in skin cancer recognition.
This clinical pathway is failing badly.

Next, I looked at urgent referrals. Bigger pile of referral letters
than expected with fifteen letters. Included small but significant
number of serious skin cancers where the GP should have used
the ‘urgent suspected cancer’ pathway. This creates a significant
patient risk; these patients are waiting for four months or longer
to be seen, instead of two weeks via the skin cancer pathway. Most
referrals in the urgent pile included patients correctly prioritised
by GPs (no concerns about this). However, our capacity to see these
patients is far too low. Upshot? Four months for an appointment.

Again, pretty poor. GPs tell me that they try to manage these
patients, knowing that with such long waiting lists, there is no
other choice. I was trying to imagine how the GPs feel when the
hospital responds to their legitimate urgent referral with a four month wait. Four months for parents of babies with terrible infantile
eczema! Four months for teenagers with severe, scarring acne!
Four months for someone with severe psoriasis! Yes, urgent category
also a dismal failure.

Slightly dreading what I would find in the ‘routine’ referrals.
I found patients currently waiting for between twelve and
fourteen months for an appointment. It was clear that most were
patients with significant skin complaints. It emphasised that
‘routine’ did not mean ‘trivial’. Deciding to dig deeper, I spoke
to Kerrie Gallear, dermatology clinic clerk. I asked her to show
me the whole of the routine waiting list. She looked surprised;
no consultant had previously shown an interest in this group of
patients. I caught her eyes flicking nervously to the top shelf above
her desk, and then back to me.

‘No? Surely not?’ I said.

‘Afraid so,’ she replied.

The whole of the top shelf was occupied by thirteen thick ring
binders, each containing about a hundred referral letters, arranged
in date order, the newest on the left, the oldest on the right.
We counted: there were 1,350 patients on our routine waiting list.
The wait to be seen was over twelve months.

It was clear to both of us that the system was failing.
No category of patient referral was working well. The patients
were getting a raw deal. The government wasn’t about to, but how
could we change what we were doing?

And then I had written, ‘What would Betsi do?’

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