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A word of caution before you settle down to this post.  You may be distressed by some of the content. Please consider whether you might wish to postpone reading until you have a sympathetic supporter available to you.

*****

I suppose an inquest can never produce a ‘good’ result.  If things were ‘good’, there would be no need of an inquest.  In some senses, my father’s inquest produced a ‘better’ result than we had hoped for; but in many respects, both process and outcome were highly unsatisfactory.

It’s hard to try to convey to people whom I will never meet, and who never met my father, what he was ‘a person like’.  My French penfriend called him ‘un vrai gentleman Anglais’, and on first acquaintance, he certainly fitted the French stereotype of the English gentleman: formally dressed; tall and thin, with a long, narrow nose; blue eyes and brushed-back mousy-blond hair; reserved and punctiliously polite in manner but with a dry sense of humour and a taste for puns; bookish, yet fond of the outdoors and gardening.

He didn’t come from a monied or gentrified background.  Two generations previously, his family were countryfolk: farmworkers and gamekeepers.  His mother had been ‘in service’ before her marriage, and his father had been apprenticed to a baker before becoming what he called ‘a civil servant’, by way of a clerical job in the Post Office.

Dad left school at 15 for an apprenticeship with the engineering division of the RAF.  At the same time as he was learning a trade, he went to night school to do his Higher Leaving Certificate, then read for an external degree with the University of London, and gained membership of a professional institute.  He moved to a job in civvy street, continuing to pursue his part-time studies, and shortly after he and my mother married, my father obtained his higher degree and a tenured post as a university lecturer.

One of my clearest memories from my childhood is of my parents going to functions at the university.  My Dad, in white tie and the long academic robes that we called his ‘Batman suit’, mortar-board on his head, sported his lopsided triangular grin that hovered between knowing and sheepish at the absurdity of it.  My beautiful, dark-haired mother wore slim-fitting Empire-line evening gowns in her favourite strong shades – emerald green, poppy red or tangerine – and over-the-elbow satin gloves that had fabric-covered buttons on the inside of the wrist.  She smelt deliciously of Helena Rubenstein’s Apple Blossom, and vanilla-scented face-powder.

In spite of his academic career, Dad remained an outdoors person.  He preferred walking five miles every day to and from work, rather than taking crowded public transport.  Year round, besides keeping our quarter-acre garden in order, he would push his wheelbarrow, laden with spade, fork, hoe, watering can and other cultivation tools, three-quarters of a mile to his allotment, shovelling up horse-droppings from the road as he went, to add to his compost heap.  In the long summer evenings, he would take the barrow out after dinner to do an hour’s work on the allotment before bedtime.

As an academic, he had relatively long holidays in the summer.  We usually spent three weeks at my maternal grandparents’ seaside home, where Dad would run stiff-legged over the sand in pursuit of footballs with my brothers; allow my sister and me to bury him as a human sandcastle; take us out behind the falling tide to go cockling, razor-clam-fishing and sand-eeling, or crabbing in rock-pools; up on the cliffs after blackberries; and into cow-pastures sparkling with morning dew that soaked our socks and shoes, in search of mushrooms for breakfast.  He is the only person I have ever known who could identify any bird that passed from its song – not just easy ones like yellowhammers’ “little bit of bread and no cheese”, or woodpigeons “tak’ twa coos, Taffy”, the metallic two-note call of a cuckoo or the liquid warble of a skylark, but all sorts of brief chirrups and twitterings that other people couldn’t differentiate.  When nightingales took up residence in the woods behind our house, he and my mother used to go to bed early, then get up again for midnight expeditions to hear them sing.  On Christmas Day mornings, Dad would get up before dawn and go to the top of the nearby hill to enjoy the sunrise on the one day of the year when he could be sure of next to no traffic noise.  Then he would come home in time to deal with the consequences of my brothers’ propensity to eat all their Christmas chocolate coins as soon as they laid hands on their stockings.

When we were babies, he was very hands-on for a Sixties-and-Seventies father.  He changed nappies and carried his infants in a baby-backpack.  As we grew older, he helped us learn to ride two-wheeler bikes, running along behind us bent almost double to hold the back of the saddle, and showed us how to do practical things like wiring a plug, changing a tap-washer, how to use sharp knives safely and build a bonfire so that it would light with the first match.  He introduced us to hill-walking and climbing in Wales and Scotland.  Closer to home, he took us foraging for the blackberries, raspberries, wild bullace plums and damsons, crabapples, rosehips and bilberries that he turned into jam.  He made Seville orange marmalade every year, spending evenings sitting on a stool in the kitchen stirring a vast preserving-pan of fruit and sugar with the wooden spoon in one hand, his nose buried in the book in the other, pausing occasionally to skim the bubbling surface of the mixture and test its ‘set’ on a cool saucer.   At weekends, he took over breadmaking from my mother and cooked Sunday lunches – without leaving the kitchen swamped in dirty crockery and utensils.  He waited while we rummaged in the children’s section of the library on Saturday mornings, and he took us to Savoy operas and Shakespeare in the park.  If we had a question, on any subject, Dad always seemed either to know the answer, or to know where we needed to go to look for it. He listened to questions carefully and answered them seriously as though we were his students, giving us caveats if he couldn’t guarantee 100% accuracy or comprehensiveness. Over the dinner-table, he played word-games (I remember extended punning competitions that left our mother helpless with laughter) and on long drives in the family minibus, he and our mother taught us to sing rounds and part-songs.

At times, he acted as treasurer and odd-job man for various local charities and voluntary groups.  He took up horology, and raised thousands of pounds for good causes by donating his fees for repairing long-case clocks.  He derived considerable enjoyment from his studies of the elegant and practical mathematics of the clocks’ gear ratios.  He also used his numerical skills to good purpose elsewhere; when Professor Sir Roy Meadow made his infamous ‘1 in 73 million chance’ claim in the Sally Clark case, Dad was sufficiently incensed by what he perceived as the egregious injustice resulting from Meadow’s statistical and logical illiteracy, to write to a number of influential people, setting out why, in his opinion, the figure should never have been admitted as evidence.  I have no idea if his efforts made any difference per se, but the reasons put forward for rejecting Meadow’s claim, at the hearing in which Clark’s conviction was eventually quashed, chimed with my father’s contentions (that the risks of a second baby’s death cannot be calculated by multiplying the independent risks of two single babies’ deaths – even more so when the figure for those ‘independent risks’ have been arrived at by an arguably dubious methodology; that even if valid, the 1:73 million was not the same as the probability of Clark’s innocence, which would have had to be calculated by setting the relative likelihood of double cot death against that of double murder; and that it was an obvious manipulation wilfully to ignore that the quoted weighting factors – such as Clark’s affluence and education – which were said to make a double cot death less likely, equally made double murder less likely).  Dad also objected with every fibre of his being to Meadow’s grandstanding, in particular his reference to winning on the Grand National at very long odds, four years in a row, as conveying a obnoxiously dramatised, dumbed-down and false impression to the jury.

Shortly before Eldest was born, Dad retired, early.  He qualified for a PSV licence to drive the community transport bus that took people from the village into town, and continued to drive it up to his 70th birthday.  Once we children had all left home, he and my mother had taken up long distance walking – the Pennine Way, Offa’s Dyke, the South Downs Way, the Pembrokeshire coast walk, Hadrian’s Wall.  While they had enjoyed bringing up their large and energetic family, I think they enjoyed each other’s company all the more for our absence, and were never happier than when spending time alone together.  They branched out into long walking holidays abroad: le rond du Mont Blanc, the Chemin de Stevenson, trekking in New Zealand and in the Indian Himalaya.  In retirement, they pursued these expeditions with renewed vigour.  At seventy, my father could leave most men of forty standing (and panting).

It was while trekking the Pyrenees, aged seventy-two, that Dad, who always preferred to walk in shorts, acquired half a dozen ticks on his legs.  He consulted a doctor in the next village, who pulled the ticks off with long-nosed surgical tweezers, and told him to watch out for a bull’s-eye rash around the bite sites, which could indicate a tick-borne infection.  Dad didn’t develop a rash, but a few days later he didn’t feel very well and had a bit of a temperature.  A second French doctor, consulted, told him emphatically and dismissively that in the absence of an annular rash, he didn’t have a tick-borne infection and that he had probably got a touch of the sun.

The temperature went away, but the vague feelings of unwellness did not.  Nine months later, Dad was suffering badly with joint pains and arthritic symptoms in unusual joints – his ankles, elbows and shoulders.  One month his ankles were puffy and discoloured, the next, he could barely move his left arm, the month after that it was his right shoulder that was affected.  His GP gave him anti-arthritics, but was puzzled by the fugitive nature of the symptoms.  That summer, Mum and Dad went back to France, visiting my mother’s relatives in Lot-et-Garonne.  Dad couldn’t cope with driving; the flicker of light between the poplar trees lining the roads made him dizzy and disoriented.  On arrival at the home of Mum’s relatives, Dad passed out on the doorstep and spent the next three days in bed.  His ankles were grossly swollen, their skin taut and mottled; there was no question of walking during this holiday.

Back in the UK, Dad went straight to the GP, who ordered a battery of tests.  A blood test showed unusual cell counts, and my father was diagnosed with an indolent lymphoplasmacytic lymphoma.  Slow-growing lymphomas of this type are commonly treated on a ‘watch and wait’ basis, but on further examination, my father’s spleen was found to be enlarged, and he was recommended for treatment sooner rather than later.  The treatment options were either splenectomy followed by daily antibiotic therapy for the rest of his life, or chemotherapy.  Dad’s oncologist inclined towards surgery, but could give no empirically validated reason for preferring one over the other, and Dad opted for chemotherapy.

He and Mum came to visit us before the start of treatment.  We had several talks about the illness and the treatment, and the one thing that stood out was that Dad’s weird arthritis remained unexplained.  Ankles and elbows are peculiar joints for arthritis to first show up in.  Osteoarthritis, the wear-and-tear type, tends to manifest in major weight-bearing joints first: knees and hips.  Autoimmune rheumatoid arthritis typically first shows up in the hands and feet, although it can appear initially in other joints, and wax and wane over time.  But twenty-five years previously, I had happened to read in a copy of Newsweek lent by an American friend, an article detailing a peculiar form of arthritis affecting people in New England; its characteristic was that it moved around the body and afflicted improbable joints; and it was due to Lyme disease, which was transmitted between deer and humans by….

“Dad, have you ever been bitten by a tick?”

*****

The absence of the erythema migrans bull’s-eye rash, which is often stated to be characteristic of, and thus necessary to, a diagnosis of Lyme disease (a myth: in fact the rash is only seen in about 50% of confirmed cases) proved a slight stumbling block, but eventually, tests showed that Dad was indeed Lyme-infected.  His chemotherapy was postponed to allow a course of antibiotics to see off the Lyme disease first.  He considered himself fortunate to have been diagnosed with, and treated for, the Lyme disease, prior to the chemotherapy that would depress his immune system and could have allowed the Lyme disease effects to worsen.

Lyme is caused by a spirochaetic bacterium, borrelia burgdorferi, a corkscrew-shaped organism similar to the treponema pallidum that causes syphilis.  Like syphilis, Lyme can start with fevers and skin manifestations, move on to affect internal organs and structures, and eventually damage the nervous system and brain.  That Dad’s infection was affecting his joints suggested that it had been established for some time.  However, there was only one NICE-approved treatment for Lyme disease, no matter how entrenched: two weeks of doxycycline antibiotics.  Dad took his fourteen days’ doxycycline, but didn’t feel better.  He was prescribed another week’s worth, after which he began his chemotherapy.  The chemo consisted of courses of tablets, and went well.  Dad didn’t feel any ill-effects from the treatment, and at the end of it, his lymphoma was declared in remission.  In the spring, he returned to his allotment, but continued to be troubled by arthritic pains in his back.  The following autumn, he underwent two operations and the back pain was diagnosed as disc herniation.  After a while, it subsided, but Dad was now suffering other problems.  At Christmas, he had such a bad stomach bug that he couldn’t come to visit as planned.  He had difficulty eating after this, and in February he became ill again.  His memory lapsed from time to time, for long-term events as well as short-term ones.  But on another day he would be perfectly capable of remembering what eluded him before, and able to start preparing his tax return paperwork.  One day, he would have to spend long hours in bed, immobile with pain; but another day he could get up, work in the greenhouse, make jokes and dreadful puns with my brother.  He complained of headaches and became hypersensitive to noise and light.  He collapsed and was found to be hyponatraemic – not enough salt in his blood.  He began having night sweats and hallucinations, seeing and feeling insects crawling over his skin.  On one occasion, he was so convinced he was trapped in a confined space that in his struggles to escape, he pushed my mother right out of bed and onto the floor.  On three occasions, he had seizures.  My mother called an ambulance each time, but each time, he had stopped fitting before the paramedics arrived, and my mother felt that her accounts were not believed.

I am well aware of the limitations of Dr. Google.  But I did do an inclusive-exclusive search on the medical terms for my father’s symptoms: splenomegaly, hyperacusis, photophobia, fugitive arthritis, hyponatraemia, anorexia, hallucination, seizure, intermittent amnesia and a number of others.  The search was framed only to turn up papers that contained all the symptoms included; I didn’t want reams of papers on hyponatraemia or photophobia that weren’t accompanied by every single one of the other things, and nothing else.  It wasn’t quite a Googlewhack (remember those?) but the search returned just three papers on separate cases.  Each concerned a patient or patients with Lyme disease.  It seemed highly possible that somehow my father’s treatment had failed to eradicate his Lyme disease and it had progressed to the state known as chronic Lyme disease, tertiary Lyme disease, or neuroborreliosis, where the nervous system is affected.

My mother did her own research and concluded that Dad possibly needed longer-term antibiotic treatment to defeat the apparently lingering Lyme infection.  Dad’s GP was sympathetic, but unable to offer anything, since the the NICE protocols did not allow for any further treatment.  It was exasperating to my mother that the NHS would happily have provided daily prophylactic antibiotics to my father had he had the splenectomy, but was not prepared to consider using similar drugs to treat chronic Lyme disease.  She took my father to a private doctor, who was dubious about treatment over and above the NICE recommendations, but agreed to refer Dad to a consultant in infectious diseases.  A friend took them to the hospital for the consultation; I drove down to meet them there, and accompanied them into the consulting room.  The consultant was perhaps ten years younger than my father.  Dad was having a really difficult time that day; late-spring sunshine was streaming through the windows, so he had to shade his closed eyes with his hand, and outside, someone was operating a lawnmower and a grass-blower.  The noise made it hard for him to hear, think, or speak and he responded monosyllabically to the doctor’s questions, whose tone grew progressively more patronising.  My mother anxiously interjected extra information about my father’s history with Lyme disease and tried to explain her fears about neuroborreliosis, but was firmly, and not entirely politely, squashed by the consultant.  It was, he said, definitely not persistent Lyme disease.  In his opinion, my father had merely become depressed as a result of his ill-health.  He asked my father if he had had any thoughts of hurting or making away with himself.  Dad looked startled, as well he might.  “No, I have not.” he said, quietly but unambiguously.  “Well,” said the consultant, “You need to see a psychiatrist.  This intolerance of light and noise, and this apparent inability of yours to swallow more than a few mouthfuls of food at a time, are all psychosomatic.” “Will you make a psychiatric referral?” I asked.  The consultant shot me an indignant glare.  “No! The proper channel for that is via the GP.”  “So will you contact the GP?” I persisted.  “I will, naturally, be writing to him in due course, but your father should make his own appointment before then.”  He sounded annoyed.

Trying a different tack, I asked the consultant what he would expect to see in neuroborreliosis that he was not seeing in Dad.  He gave me a look that I recognised – the appraising one that says, head-pattingly, “Good question, young woman!” when you get it from a lecturer.

“Peripheral paraesthesia.  Pins and needles or tingling – that’s what we expect if there is neurological involvement.  Your father has depression.”  I didn’t remember until long after we were out the door about the intangible insects.

At home, Dad moved slowly and painfully into a chair.  He asked for food, but when it was placed on the table, he moved away.  “What’s the matter, Dad?”  “I want to wait for your mother to come through,” he whispered.  “But I’m so hungry all the time, I can’t sit and look at food – it’s torture.”  Yet when Mum did come through, he only managed to eat about three tablespoonfuls.  “I’m still hungry, but I feel too full to swallow anything else – it hurts.”  He lay down on the sofa and closed his eyes.  My mother shut the curtains and we tiptoed out.

In the kitchen, there was a thick layer of felt and newspapers over all the work surfaces.  My mother picked up our teacups and beckoned me into the sunny, flower-filled garden before she would hold a conversation.  “He can’t abide any noise.  I don’t listen to the radio any more, I’ve covered the worktops to muffle them and I’m even using plastic spoons to stir things – just the sound of a metal spoon clinking against china is too much for him.  One of the eucharistic ministers brought him Holy Communion the other day, and she had a plastic bag with her that rustled.  He asked her to take it away, the noise was causing him pain.  I know he’s going to be wiped out for days after this.  People are being so kind – even taking my laundry for me, because I daren’t run the washing machine, and I daren’t leave him long enough to go to the launderette – but what are we going to do?”  She began to cry, quietly and carefully.  I sensed that it was a long way from the first time.  Nobody can cry that discreetly without a lot of practice.  After a few minutes, she wiped her eyes, jumped up and said, “We have to go back in.  Chris doesn’t sleep for long, and he can’t shout if he wakes and needs me.”

Over the summer, my father had several further emergency hospital admissions.  He was cachectic (wasted) and surviving mostly on prescribed sip feeds, which he often took at night when he was awakened by noise from passing traffic or by the nightmares and hallucinations.  The dark and quiet of the house at 2 a.m.  made moving around in the kitchen easier for him.  In hospital, the bustle and noise of the wards made him feel even more ill; even a single side room was unbearably noisy, the hum of the air-conditioning reverberating like a hurricane inside his skull.  Tests ordered by his oncologist showed that the lymphoma was still in remission, but endoscopy revealed that Dad had one of the worst cases of oesophageal and gastric candidiasis that she had ever seen.  His gullet was raw and his stomach was full of the fungus, which explained his difficulties with eating and swallowing.  Two weeks’ treatment damped the infection down but did not cure it.  The oncologist was puzzled and seriously concerned.  “We normally only see this sort of intractable infection in patients with a complete immune-system collapse, like people with HIV who are developing AIDS.”  Mum said that she had heard that chronic Lyme disease could have catastrophic effects on the immune system; was it a possibility that it could present similarly?  And if the swallowing problem was physical, not psychological, was it possible that Dad’s other allegedly psychosomatic symptoms also had as-yet undetected physical causes, possibly Lyme-related?  The oncologist didn’t know, and didn’t consult with her infectious-diseases colleague.  Nor did my mother try to speak to him.  Communication between them had effectively broken down.  Dr. Infectious-Diseases had long since decided that my mother was inventing, or at any rate grossly exaggerating, Dad’s symptoms; had even told my mother that she needed to relinquish what he labelled her ‘irrational obsession with Lyme disease’.  She couldn’t imagine that contacting him would do anything more than expose her to further rude accusations of fantasising and timewasting.  Instead, Mum took Dad home to nurse him twenty-four hours a day, never leaving the house and moving silently as a shadow behind the permanently closed curtains.  The oncologist prescribed a maximum dose of fluconazole for the maximum period of 28 days, and the GP chased up the psych referral.

The fluconazole worked.  Dad’s normal appetite returned; in a couple of weeks he regained five pounds.  The psychiatrist wrote to set a date for an initial telephone consultation.  Then it all went wrong.  It was beautiful, sunny weather.  Too sunny for Dad.  The local aerodrome staged a week-long show, with low-flying aircraft roaring overhead day after day.  The council began digging up and replacing the tarmac on the road outside, with much grinding and clattering of machinery.  And the oesophageal thrush returned.  Dad stopped eating again.  When the psychiatrist phoned, Dad felt too ill to speak to him.

A few days later, at around 2 am on a Thursday morning, my parents’ next-door neighbours were woken by the sound of a lorry in front of their house.  It seemed to have some sort of machinery churning on the back of it.  The neighbour got up to see what the racket was about and thought it was a line-painting lorry come to re-mark the newly resurfaced road.  He went back to bed, but shortly thereafter heard terrible screaming coming from behind the house.  He looked out through the rear window, and this time saw flames in Mum and Dad’s back garden.  Someone was staggering about in the middle of them.  He saw a woman in a nightdress run out, run back for towels, run out again to the figure, which had now fallen, and begin extinguishing the fire.  The neighbour is ex-military, saw active service in Northern Ireland and the Falklands.  He went into action, dialling 999 before vaulting over the fence, fetching water to try to cool my father’s burns, finding a warm coat to wrap around my shocked and incoherent mother, directing the emergency services when they arrived.  The police treated the house and garden as a crime scene.  Since my mother was the only person on the spot, she was, although we didn’t realise it at the time, the chief suspect.  We worked out later that the constant police observation of her was not lifted until mid-morning, when a statement from the next-door neighbour made it clear that she had not been outside when the fire started.  Mum, a trained St.  John Ambulance volunteer, had known even as she beat the flames out that my father could not possibly survive his injuries, and that she had very little time left with him, but despite her desperate requests, she was not allowed to go in the ambulance with him.  A retired police-officer neighbour later told us that it is basic standard practice to keep possible suspects apart from potential victims.  That I can understand; what I don’t understand how anybody could for a minute, for even a second, have suspected my mother of having immolated my father.  The consequences of standard practice for my mother were cruel beyond words.  After over fifty years of a happy life created and constructed in the closest of partnerships, she never got to say good-bye to my father while he was still conscious, or know for certain that she was heard one last time as she told him how much she loved him.  By the time the police escorted her, still under continuous constabulary supervision, to the hospital, Dad was in a medically-induced coma.  He remained in it until he died, fourteen hours later.

*****

The burns unit nurse who looked after Dad while he was dying was outstanding: unfailingly attentive, gentle, respectful.  He encouraged my mother to keep talking to Dad and talked directly to him himself, explaining what he was going to do before getting started.  He wouldn’t let anybody talk about, or over, my father, even though Dad was unconscious; he seemed not just to be caring for Dad, but to care about him.

 The doctor who came with him afterwards to see us in the stuffy family room was very young, still in his twenties.  He appeared anxious.  I thought he was possibly afraid that he would become emotional and as a result was rather wooden.  He delivered his condolences stiffly, and, to everyone’s surprise, gave my mother an awkward hug.  “What happens now?” I asked.  “There will be an inquest.  We won’t be able to release your …  your father’s body until the coroner authorises us to do so.  We will tell the local coroner, and I expect he will transfer the investigation back to the coroner in your home area.  Call tomorrow morning and we’ll be able to give you more information.”

My children went home with their father.  My brother went to my parents’ house to fetch my mother some clothes and toiletries, and my mother and I went to my sister’s house.  My sister’s offspring were, fortuitously, staying with their other grandparents.  I fed my mother a milky drink, teaspoonful by teaspoonful, then helped her into the bath and washed the smells of smoke and hospitals out of her hair and off her skin.  She was blank-eyed with shock and exhaustion, shivering and nauseous, and the soles of her feet were badly blistered where she had run out in her nightwear and trampled down the flames barefoot.  In all the rush and confusion, nobody had thought to check her over, much less offer her treatment.

My recollections of the next day are patchy and incomplete.  I know we got in touch with the Coroner’s office and were told that there would be a post-mortem first thing on the Monday.  I know we asked about how we could request that the post-mortem check for signs of Lyme infection of brain and nervous system and were told to make the request in writing, with reasons, to the coroner, as soon as possible.  I know we enquired about a separate post-mortem and were told that it wasn’t necessary – the coroner would issue the required instructions; if we requested a private post-mortem, it would probably be done by the same pathologist and therefore would not turn up anything new.  It is just that I have none of my usual visuo-spatial memory of where I was or what I was looking at when I learned these things.  I do remember looking at the A4 gatefold information leaflet my brother had collected from the coroner’s office, and wondering how six DL columns could suffice to cover something as momentous as a violent and unexpected death.  I know I went systematically through my mother’s encyclopaedic address book, telephoning endless relatives and friends to give them the news before it appeared in the papers, and I remember phone conversations with my aunts in the evening, during which I felt utterly detached, as though the circle of lamplight in which I sat were a stage spotlight and I merely mouthing the words of an exceptionally nasty playscript that had nothing to do with me personally.

I think my siblings and I must have begun writing the letter to the coroner on the Friday, but I know we didn’t finish it until the Saturday.  It was hard going; trying to put a comprehensive yet succinct explanation on paper was like wading through, and writing in, treacle; whilst wearing lead boots and gloves.  At some point my brother disappeared to dig up the scorched areas of the back lawn and replace them with newly-bought green turves.  He went round to thank the neighbour for his help and discovered that all the neighbours had been doorstepped by a reporter for the local paper, who was unashamedly in search of juicily gruesome details with the enthusiasm of a hound after truffles.  Every single neighbour had refused to comment.  “Sent him away with a flea in his ear,” said Mr. Next-Door.  “Your mother doesn’t need ghouls like that poking around, on top of everything else.”

Eventually we had a form of words that we all agreed was probably as good as we were going to get it.  We emailed and faxed this to the Coroner’s officer, with fax and email copies to the pathologist’s office, asking him to consult the Coroner if he hadn’t heard from the Coroner beforehand.  Finally, my brother printed off another copy, which he hand-delivered to the Coroner’s office at 8.30 on the Monday morning, an hour before the post-mortem was due to start.

My father was buried nearly three weeks after his death.  The post-mortem report didn’t arrive for several weeks after that.  To our horror, we discovered that the histopathological examination for Lyme disease that we had asked for, had not happened.  It was too late to do anything about it.  The Home Office would have almost certainly refused an exhumation, even had anyone in the family felt up to requesting one.  And even in the very remote eventuality of an exhumation order being made, the chances of there being anything left to find at a further PM were nil.  Brain tissue is delicate and degrades rapidly; my father’s body had been in the grave for weeks.

The other documents provided by the coroner were also a shock.  The police report was full of errors and incomprehensibilities; it mentioned locked doors in places where no doors existed and described events that had not happened, or not in the way they were presented.  Even the house address was wrong.  The medical evidence was minimal to the point of being uninformative.  All we could do was write as comprehensive a report as possible on the last years and months of my father’s life, and back it up with all the peer-reviewed reporting of and research into Lyme disease that we could find.

My mother’s great fear was that, since my father had undoubtedly struck the match which started the fire that killed him, the inquest verdict would be the starkly horrific one of suicide.  For someone of her generation and belief-set, this was the ultimate shame: that her principled, courageous husband could be thought to have deliberately set out to end his own life in such a terrible manner.  She wanted it acknowledged that his brain had been affected by the Lyme disease; that at the time, he probably had not had a rational awareness of his actions and the consequences.  She needed any suicide verdict to have a ‘while the balance of his mind was disturbed’ tag on it, and she hoped that the Coroner might be moved to make recommendations about more intensive treatment for long-established Lyme disease.

At a brief meeting prior to the inquest, four impossibly long months later, the Coroner was quite sharp with us when we asked what had happened over the post-mortem.  Apparently neither the electronic nor the hard copies of our letter had made it to his desk, although he was aware that the pathologist had received the request.  The pathologist had ignored it, very properly in the Coroner’s view, since the pathologist should be taking instructions only from the Coroner.  We said that we had not wanted to instruct the pathologist, only to ask him to liaise with the Coroner to clarify the questions that we had requested the Coroner to ask for us.  Well, we had not gone about it in the proper manner.  When we said we had acted to the best of our ability in line with our understanding of the information received from his office, we were asked, sternly, if we were alleging that the coroner’s officer had given us misinformation? No, (“I’m very pleased to hear it!”) we just wanted to know what had happened, because from our perspective, something had gone irremediably wrong.  Without the physical confirmation of active Lyme disease, it would, we felt, be hard to show (as we hoped to) that it was probable that our father was in an hallucinatory state when he left the house that night.

The Coroner said he didn’t know what had happened to the letter, and it was unlikely that an explanation for its non-appearance could now be found.  If proceedings went ahead that day, he was minded to deliver an open verdict.  If we wanted to push the Lyme angle, it would have to go to a jury inquest, which would take more time, and under which the verdict would be more uncertain.  It was for my mother, as next of kin, to decide in the next ten minutes what she wanted to do.  We had to go out of the court building to discuss it; the only available inside space was the lobby, and that was occupied by journalists.  In a brief roadside huddle, we decided to go ahead.  This way, the ‘s’ word that my mother so dreaded would be avoided.  I think we expected that there would be only the briefest exposition of facts and then the verdict, but in the event, the Coroner went through a lengthy and agonisingly detailed account of what had happened as a preface to his conclusions from the evidence.  He included a comprehensive consideration of all possible verdicts – including various shades of suicide – and his reasons for rejecting these and settling upon an open verdict.  My mother sat shaking, a continuous vibration running through her.  At the back of the room, the journalists’ pens scratched busily.

The main consideration weighing with the Coroner seemed to be that my father had left no written record of his intentions, and he had previously rejected any suggestions of suicidal ideation.  The Coroner emphasised that his responsibility in law was to determine the particulars of how my father came by his death, not to look at the broader circumstances surrounding it.  Although Dad’s illness was mentioned at some length, the Coroner carefully avoided directly suggesting that my father might have had persistent Lyme disease or neurological consequences from that disease, much less that the disease had anything to do with his death.  The cause of death was multiple organ failure consequent upon severe and extensive burn injuries, and the verdict was open because there was nothing in the evidence to allow the Coroner to come to a conclusion as to why Dad had been up the garden at two in the morning with firelighting materials.

So while the verdict came out better than we had feared, there were several matters that were, and that remain, unpleasant and uncomfortable.

The biggest is the limited scope of inquests.  How can it be just for such a narrow focus to be imposed?  Why are wider considerations excluded?  Why are families left subsequently to pursue those wider concerns as best they can with Government departments, public organisations and professional bodies?  An officer of the law is in a far better position to follow up on these wider enquiries than is a bereaved private citizen.

The second distressing item is the position of family in the inquisitorial process.  We had made specific requests and had believed, as we had been led to, that the Coroner would pursue these on our behalf, or give us the option of doing so ourselves, were he not to be in a position to help.  In the event, our concerns simply did not appear.  We had no way of knowing before the critical point that our efforts had been in vain, and no way of rectifying matters after we found out.  The sense of helplessness and missed opportunity was crushing.  It felt like we had lost Dad all over again, let him down, failed once more to provide care for him as he had cared for us.  It was as though he no longer belonged to us, or we to him; he belonged to the law and the coroner, and family members were mere third parties: off to the side, spectators, more of an inconvenience than contributors or the people whom the process was supposed to help.

The third thing is how intimidating the court proceedings were.  We were not up against opposing counsel, yet we felt intimidated by the formality of the proceedings, vaguely culpable for asking questions of which it appeared the Coroner did not approve, and deeply disadvantaged by our ignorance of what was going on.  I cannot even begin to imagine how terrifying it would be for someone, still shocked and grieving as we were, to have to try to persuade the Coroner to incline to the unrepresented family’s view in the teeth of opposition from a barrister.  It is patently unfair to expect families to represent themselves and their lost one at inquests.

Sarah Ryan and Rosi Reed don’t have to imagine the difficulties of dealing with opposing counsel. They know only too well from their sons’ inquests just how bitterly unfair, how emotionally and financially costly, the present system is for victims’ relatives. They have been meeting with Simon Hughes, the Minister for Justice, to try to persuade him that the inquest system needs revision to have more built-in consideration for, and fairness towards, families.  I hope he listens.  I hope he hears.  Above all, I hope he acts.

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