1999

`This is essentially a record of my activity, having retired from the NHS, but continuing as as Chairman of the UK CF Trust’s Research and Medical Advisory Committee

Jan. 18th. 1999    Meeting at York University with Professor Alyn Morice   

Alyn Morice is newly appointed to the chair of medicine in Hull and we met with him and Members of the Health Economic’s Department at York. The department intend to undertake an ambitious countrywide review of adult CF services and compare CF Centre care with District General Hospital care for CF adults.  I suggested it was a sort of study the NHS R&D should fund.  They were already approaching Alyn Morice, who was always rather antagonistic to having patients referred from Hull to Leeds. Funding a study that would show the obvious didn’t seem a good use of CF Trust money! I made this clear

Jan 27th. Visited Alan Smyth at Nottingham City Hospital

The visit was to discuss various aspects of his study on one vs. three IV doses of tobramycin each day for which he was awarded £250,000 in the last round of CF Trust grants. They are well underway with organising the study and appointing staff. I was reassured that the study will go well ( as it did). It is most important that it does as it is a most important clinical question. In  addition, there will be detailed studies of hearing, balance and renal toxicity. This is a very important aspect in view of the increasing longevity of CF patients who receive numerous courses of tobramycin – toxicity does seem to be cumulative.

As mentioned above this excellent study was completed and very useful clearly supporting the use of the one daily IV tobramycin routine.  Also, there were useful findings and publications on hearing and the renal aspects.

Smyth A, Tan K H-V, Hyman-Taylor P, Mulhearn M, Lewis S, Stableforth D, Knox A, for the TOPIC study group. Once versus three-time daily regimens of tobramycin treatment for pulmonary exacerbations of cystic fibrosis – the TOPIC study: a randomised controlled trial. Lancet  2005; 365:573-578. https://pubmed.ncbi.nlm.nih.gov/15708100/

Jan. 29th Meeting of the Swindon CF Club.
I was invited as a guest to the Southern CF Club which had been modelled on my Northern CF Club. I was asked to discuss with them the use of antibiotics. There were 50 doctors there and we had a good lively discussion lasting one and a half hours. It was reassuring that most seemed to agree on the important areas of use such as the early eradication treatment of Pseudomonas. I was staying in Cardiff at the time and but spent the night in Swindon at the de Vere Hotel returning to Cardiff the next morning.

Feb. 1st. Visit Paediatric CF Unit at the Heath University Hospital  Cardiff

I see Dr Iolo Doull the consultant paediatrician – he had been one of my Senior House Officers at St James’s some years back.. I particularly wanted to discuss the progress on Service Standards and Accreditation which we had asked Dr David Heaf of Liverpool and Iolo Doull to progress. Progress was modest but I’m sure will soon progress after we have had a further meeting in May.
I also had an opportunity to have a chat with Dennis Shale now Professor in the Adult CF Unit where there were encouraging plans for progress.

Feb. 2nd. Visit Newcastle CF Unit with Dr Martin Scott
Martin Scott, the CF Trust Medical Director, and I periodically visited various CF   centres to see how they were managing. 

On this occasion I drove Martin Scott to Newcastle and we visited the Royal Infirmary where we met with Dr David Spencer and Chris O’Brien the two paediatricians with a major interest in CF and also wthe other members of the Newcastle Paediatric CF Unit.  We attended the ward meeting, met the staff and saw the hospital facilities. We were encouraged by the recent developments in the paediatric unit which has been through a difficult time over the past few years including having major problems with the B. cepacia infection.   
David Spencer and Chris and O’Brien are young and very able paediatric consultants who have already made a favourable impact on the service. They have obtained funds for a paediatric physiotherapist and are due to have a Blue Peter funded CF nurse specialist in the near future.   I have no doubt that the Newcastle paediatric service will now “take off” and they are already developing a shared-care service with some local hospitals, although there is are still a few “do it yourself” paediatric consultants in the Newcastle region.

Feb. 8th. Travel to CF Trust HQ at Bromley
In the morning I attend the CF Trust Publications Committee.                     In the afternoon I attended a rather unproductive meeting with men from PathoGenesis, the makers of the new tobramycin preparation for inhalation (TOBI).  I hear it will cost £8000 per year per patient compared to the IV tobramycin we use for inhalation which costs £3500 a year. This will be a problem as the new preparation has not yet been shown to be superior to the preparation used by many UK patients for nebuliser treatment.  It is unlikely to be more effective  but perhaps safer?

Feb. 15th to 17th.  Ann  and I visit Brighton 

I visit the Brighton Alexandra Children’s Hospital and see Dr Paul Seddon, the local paediatrician. We arrive at 3.30 pm, have a 2 hour meeting with the team. then give a lecture in the evening on CF at the Hospital for staff and parents.  They have 30 patients and a shared care arrangement with Prof. John Price at King’s College Hospital in   London. The service is good but they desperately need a CF nurse specialist for the 30 patients.  The adult service is not satisfactory but this is hearsay and will need evaluating.

Paul was a keen and pleasant man and it was no surprise that he subsequently developed a Tertiary CF Referral service in Brighton and became Professor there.

We stay at the Grand Hotel on the front and on the second two days have a look round Brighton at the local sights.    We had a pleasant room on the top floor of the hotel with good sea views but the hotel had seen better days!  The only slight jarring note was when I picked up a newspaper apperntly laid out in the hall fro guests, I was quickly asked to pay for it by the porter!

Feb 24th. Association of Medical Research Charities and Foundation for Integrated Medicine Meeting at St James Palace, London  

I was an invited member of the audience related to my role as Chair of the Research and Medical Advisory Committee of the CF Trust. Prince Charles attended all the lectures and sat on the front row – I notice he had a nice soft cushion on his chair!
There were various presentations concerning conventional and alternative

medicine. There was a buffet afterwards and I had chance to say a word to Prince Charles whilst standing in a small group. He asked about CF. I don’t remember quite what he said. I do remember he had a sherry and we all and soft drinks!
However, I was really impressed how easily he spoke with virtually everyone moving between small groups.  I learned a good deal about medical charities complementary and alternative medicine – which should be complementary and certainly not an alternative in cystic fibrosis.

 March 3rd. We visit the House of Commons
We ran a lunchtime meeting for MPs to encourage their interest in CF. They could pop in when they had the time during lunchtime.  I gave a 5-minute talk about the CF Trust. Rosie knew many of the MPs who visited from when she was an MP.

March 4th. Lecture at the CF Nurses Annual Conference in Cardiff.
This was an invited lecture for the CF nurses who came from all the CF centres around the UK. They were a great group who were actually at the “coal face” of CF care, which could be very stressful. The conference went well and I knew very many of the nurses from previous CF meetings.
I stayed at the Cardiff Bay Hotel – all I remember about the hotel was that the wine was corked! It’s the only time I have ever sent a bottle back. Afterwards we stayed with Sarah and Richard for a couple of days in Cardiff.

March 10th. CF Trust Infection Control Group meeting  in London
We had a lively meeting and agreed revisions of the CF Trust Burkholderia cepacia guidelines. At the meeting it was agreed unanimously to advise against caravan or any other communal holidays for people with cystic fibrosis.  The document was subsequently revised incorporating the group’s recommendations was approved by the Research and Medical Advisory Committee.

Mar. 16th – 21st. Meeting in Copenhagen  “Pseudomonas aeruginosa East Meets West” organised by Niels Hoiby

eeting to discuss the problems of Pseudomonas aeruginosa infection in  cystic fibrosis and in panbronchiolitis, a serious condition which occurs in Japanese  people. The chest infection is very similar in the two conditions. Of particular interest is the unexpectedly good response of Pseudomonas infection in panbronchiolitis to treatment with some drugs such as an erythromycin antibiotics (macrolides). The effect is thought to be anti-inflammatory. In a  controlled trial in people with CF at the Copenhagen centre the results were disappointing as many patients failed to complete the trial (always a bad sign that they don’t feel any better!).  

A controlled trial on the effects of azithromycin in children with chronic Pseudomonas infection had started at the Brompton headed by Dr Andy Bush. (This and all major subsequent publications on the macrolides are interesting and described in the Topics section of my cysticfibrosis.online/history.)  Suffice it to say that subsequent trials led to the widespread use of azithromycin as a long term additional treatment for people with chronic Pseudomonas infection but not as an individual treatment non infected patients..

March 22nd  CF Cochrane Group meeting in Oxford
This is an increasingly useful group headed by Ros Smyth analysing and documenting the published work on cystic fibrosis. The systematic reviews deal with specific topics in detail and are published every 4 months to make up the Cochrane Library.

March 23rd. Meeting on Medical Screening at the Royal College of Physicians, London
I prepared an independent report on this meeting for the CF Trust. It was useful to get insight into the workings of the National Screening Committee who would ultimately decide on the neonatal and antenatal CF screening.  The recent report on CF screening has been considered by the Antenatal Group (Dr Pat Troop) and the Child Health Group (Professor David Hall) of the National Screening Committee. You’ll read elsewhere it was over 2 years before neonatal CF screening was approved by the Government for all the UK (2001) and then against the advice of the National Screening Committee! Antenatal screening is still not routine in the UK (2024).

March 24th. British Psychologists in CF Group. Meeting at the Institute  of Child Health, London.

The CF Trust recently recognised this group this was a very encouraging meeting of an already active group coordinated by Dr Mandy Bryan, the psychologist from Great Ormond Street CF clinic and Dr Alistair Duff from the CF clinic at St James’s Hospital in Leeds. The group has already produced Consensus Standards and they play an increasingly active part in international CF meetings.

March 25th. Annual CF Trust Staff Meeting at Sunridge Park in Bromley
I gave a talk on the present medical aspects of cystic fibrosis.  It was the first time I’d seen all the CF Trust staff together. It was a good day and Ann and I both enjoyed meeting everyone there.

March 31st. CF Trust’s Clinical Trials Advisory Group (CTAG) Meeting in  London

Professor Ross Smith now chairs this group. The work of CTAG is increasing and links are developing with both the US and Canadian trials groups. In addition to advising on proposed clinical trials, CTAG considered another study on osteoporosis submitted for funding. They advised RAMAC that it seemed a good study. It is important to emphasise that CTAG advise on the quality and design of clinical trials but it is RAMAC to decide whether they should be funded, and ultimately it for the Trustees to finally approve them.  As you would say in latest NHS parlance CTAG will “kitemark” clinical trials to aid  RAMAC in making their decision.

April 8th. Association of British Pharmaceutical Industries in London

I was invited to their dinner by Dr Peters, Medical Director of Solvay, the makers of the pancreatic enzyme preparation Creon.
The politician Frank Dobson was the guest speaker who was quite entertaining but said little of substance; he seemed to be reassuring the industry in general terms. After the dinner I stayed at the Royal Society of Medicine.

April 9th & 10th. Oxford. Lecture to  UK Chest Registrars on  “Asthma in Childhood”
I recall this meeting was in one of the old colleges (sorry can’t remember which one). My lecture was on “Asthma in Childhood”.
I mentioned that some interesting research had been carried out recently in Liverpool relating to the house dust mite.  A voice from the back said  “That was my MD study!”  It was Martin Walshaw from Liverpool, then a Senior Registrar in Respiratory Medicine. He later became a leading CF Consultant in the Adult CF Unit in Liverpool.
On another unrelated subject we were horrified to discover was that the Oxford Harry Ramsden’s Fish and Chip Shop restaurant had closed down!

April 14th. Visit Sheffield at the invitation Dr Frank Edenborough the  new chest physician for CF Adults

Frank was keen to develop the Adult CF service at the Northern General Hospital in Sheffield.  I sent a separate report to the CF Trust with various suggestions on how to CF Trust could help. A professional adult CF Unit is long overdue in Sheffield.  Now there is a first class CF physician in post I suggested we should support him all we can. I was pleased that Rosie and Martin intended to make a further visit to Sheffield in due course.

 

April 20th – 27th. Holiday with Jill Coldbeck in Majorca HPB Biniorella
Ann and I had a pleasant week with Jill Coldbeck at the HPB Biniorella in Majorca. We also visited Palma during our stay.  I confirmed that my new mobile phone works! Have since managed to use it for emails working with a Psion 5 Palm top.

April 29th. British Telecom Offices, London
Attended a very good demonstration of video equipment arranged by John Pycock. The main reason was to examine the possibility to use video conferencing for people who are unable to attend meetings because they have B. cepacia infection chest infection and are a serious risk to other patients. It was impressive and Graham Barker and his colleagues at the CF Trust are going to explore the possibilities of using such a system.  Not sure if this particular system was used but eventually Zooming was common practice and widely used.

May 4th. CF Trust Publications Committee at Bromley

We reviewed the many CF Trust publications. Sandra Kennedy the  publications manager at the CFT was an excellent person. We worked very well together on many of the publications after the various groups had decided in broad terms what they wanted to say.
Sandra had been at the CF Trust almost from the start in 1964 and it was always a pleasure to work with her.  One of our most important publications was the first Standards of Care document on which the first European Standards document was based.

May 5th. CF Trust’s Infection Control Group meets at Manchester  Airport

We had this meeting at the airport as both John Govan from Edinburgh and Stuart Elborn from Belfast travel by air. Again, this proved to be a very lively but very valuable meeting. The B. cepacia document was agreed and is very good. At our next meeting we will have the difficult job producing guidelines for the control of Pseudomonas aeruginosa infection. Many CF clinics still do not segregate their patients who are chronically infected with Pseudomonas from those who do not have the infection. Some, otherwise intelligent, clinicians were not convinced it is necessary. I was pleased that in the adult clinic in Belfast such segregation of Pseudomonas and non-Pseudomonas patients already occurs.

John Govan made a massive contribution to the understanding of CF microbiology for which he received both the ECFS Award and the Panchaud Medal of the CF Trust.

May 7th and 8th. Lecture to the Association of Paediatric Respiratory Nurses on “CF – Now and the Future” at their Annual Meeting in Blackburn
I was pleased to be invited to give this lecture as many of these nurses have some involvement with just a few patients with Cystic Fibrosis. The patients are  usually on some form of shared care with a major CF Centre. We are now encouraging the shared care arrangement provided it does not result in second-best treatment.  The balance between CF Centres and local CF Clinics is complex and is being considered in detail by the Clinical Standards Group. It will also be on the agenda of the Clinic Directors Meeting in September.

May 12th. Miss Karen Roberts leaving party.

Karen Roberts was the senior nurse on the paediatric unit, first at Seacroft and then at St James’s. She was a very pleasant person who was my Ward Sister back in 1972 before she rose through the nursing ranks. I gave a warm speech of thanks and good wishes from us all – sadly I have lost  the text but managed to find the photo.

May 13th. Invited lecture on “Neonatal CF Screening” at the Great Ormond Street, Paediatric Respiratory Course in London
There was a large audience who seemed interested in cystic fibrosis and they asked many interesting questions. It is perhaps not too surprising that people involved with CF, such as the GOS audience,  cannot understand the objection to neonatal CF screening!

In the afternoon I  returned to the Royal Society of Medicine to spend two hours with two public relations consultants representing a pharmaceutical firm who wanted to improve their relations with the CF Trust.

In the evening we have dinner at the Royal Society of Medicine with the Chief Executive of PathoGenesis (and his fiancé). They make TOBI  the new preservative free formulation for inhalation which will be licensed in the UK towards the end of 1999. It will cost about £8000 per year.  We do not know how it will compare with the intravenous preparation of tobramycin which is used in the UK for nebuliser treatment.  50% of patients in many large UK clinics are already on a nebulised antibiotic – either the intravenous tobramycin preparation made into a solution or colistin with an approximate cost of £3000 a year. The National Institute of Clinical Excellence (NICE) will be considering TOBI in due course. 

May 18th. Visited Dr Iolo Doull at the CF Unit, University Hospital Cardiff
We discussed various matters but mainly how the Blue Peter nurse appointment was going as there seem to be a delay in appointing someone to the post. The CF Trust was concerned at the slow progress to have been made since the money had been allocated. I was able to report that they were making good progress and due to interview a number of good applicants the following week.

May 19th. Visited Mary Carroll’s Adult CF Unit in Southampton at the  suggestion of our Chairman

Mary has approximately 90 adult patients. I was very impressed by her team potential facilities and the general enthusiasm of the relatively new CF adult team. Also they are developing shared care with a number of hospitals in the region. I’ve sent a full favourable report to the CF Trust.

When at the hospital I had the opportunity to talk to Amanda Bevan, the pharmacist who has written the pharmacopoeia for our new Consensus on Antibiotics.

May 24th. Visited Prof. Alyn Morice’s Unit in Hull with Rosie Barnes
Alyn Morice has  been appointed Prof. of Medicine in Hull and with the added responsibility to develop an adult CF service there. Rosie, Alan and I spoke at the meeting. Many patients and relatives attended and I thought the meeting went well . Alyn has 22 adult patients and an embryonic team which I hope will expand in due course – it will if they provide a good service and the patients are satisfied with the service.   

I don’t remember the meeting too clearly but I believe it was coolly polite! I was never very popular with our Hull colleagues as they were unhappy that so many of the Hull ~CF families eventually opted for treatment of their CF in Leeds after they had been fro an initial comprehensive assessment.  We had many patients referred to Leeds from Hull for CF Assessments over the previous 15 years and many, having had a full assessment and radical change in their management. Having then observed the often dramatic improvement in their condition, they opted to continue their long term follow-up at St James’s.
It appears from the website that the Hull Adult CF Service subsequently combined the York Adult CF Service and appears to be based in York. So presumably things did not go well.  Alyn Morice is the listed as Deputy Director and Rebecca Thomas is the lead Consultant in the York Adult CF Clinic. 

May 26th RAMAC Meeting in London
It was a good meeting with no major problems. I prepared a summary for the Trustees’ next meeting.

May 29th. Attended the Adult CF Association Annual Meeting at the City Hospital, Belfast
There was some discussion of the CF Trust Infection Control Group’s  B. cepacia document.  It was an interesting meeting. I had detailed discussions with Sam Hillyard of the CF Adults committee and we agreed to change that the risk of travelling in closed places, such as a car, from medium to high risk.

June 2nd. Invited to make a presentation to a meeting on CF screening organised by the Antenatal and Child Health subgroups of the National Screening Committee at the Institute of Child Health in London
The meeting was prompted by the publication of our Health Technology Report of Screening for Cystic Fibrosis. The new report was discussed and my impression was that the antenatal screening would not be supported and neonatal screening may have a slim chance – it was not so expensive (£1,200,000 to 2,000,000) compared with antenatal screening (£10,000,000+) and already 20% of the UK newborns were screened. The main questions which seem to preoccupy the group were how many infants of the 300 born every year would benefit from being diagnosed at three weeks rather than at eight months without screening. We are going to try and give them an answer.

I was invited to attend as I had been a co-author of the recently published HTA

 “Screening for cystic fibrosis”, Health Technology Assessment 1999; Vol 3:No 8. Murray J, Cuckle H, Taylor G, Littlewood J, Hewison J.   https://pubmed.ncbi.nlm.nih.gov/10374080/ 

                So I  was asked, as the paediatric author, to review the evidence for neonatal CF screening which I did in great detail. However, I was given a very hard time by some members of the National Screening Committee who were present at the meeting (what an absolute pain they were – many had little knowledge of CF). It was not a pleasant meeting – they had obviously made up their minds not to support neonatal CF screening and to give me a really  bad time. They certainly succeeded!  They maintained that there was no evidence that the long term survival of the condition was affected. Here it was apparent that Cochrane was, yet again,  defeating common sense and experience.

Addendum: However, in 2001 it was a great satisfaction both to me and Rosie Barnes at the CF Trust when Yvette Cooper, the then Health Minister, whom we had visited in her office at the Department of Health, overruled the National Screening Committee and recommended the introduction of national neonatal CF screening! We will always be grateful to Yvette Cooper, whozincidentally was pregnant herself at the time – this may have helped!  Undoubtedly a major turning point in 2001 was the paper from Prof. Phil Farrell’s group in Wisconsin that showed significantly better growth in screened infants at the age of 11 years.zz

June 4th. Talk to Pharmax pharmaceutical company at their headquarters in Bexley.zI was invited to talk about “The development of CF care”.  I had always had a good relationship with the company (now called Forest Laboratories) as I first introduced and reported the use of nebulised colomycin (their product) as being useful for the successful eradication of early Pseudomonas infection in a letter to the Lancet in 1985.zz

Prior to our publication, once Pseudomonas started growing it was thought it could not be cleared. Essentially, the company has been built on the increasing sale of colomycin which, up to the time of our publication,  was an old little-used antibiotic from the Sixties. It is now a routine treatment for early Pseudomonas infection. The staff who have been with the company long enough joke that the company should have my portrait in oils hanging in their boardroom!
I mention this again as this Lancet letter is undoubtedly the most important publication of my career and is now generally recognised to have had a worldwide impact on CF management, in that early eradication is now routine policy in all countries – even the USA – better late than never! ( described in more detail in the section in “First of three original observations” on this website)

June 8th – 13th. ECFS Conference in The Hague.
A pleasant meeting with the posters published in the Netherlands Journal of Medicine.   Leeds was well represented. Sue Wolfe had a poster on the growth of screened and non-screened infants reporting our 10 year experience in Leeds. “The nutritional status of the screened patients was generally very good with the mean weight and height standard deviation score remaining above -1 at all ages the gradual improvement in values over the first seven years in both groups indicates that aggressive nutritional support allows rapid catch up growth over this period after seven years the increasing need for decline in the controls may reflect that it was difficult for later diagnosed patients to maintain weight gain and growth”

Steve Conway, now Director of the Leeds CF Centre,  had the most posters of anyone being an author or co-author involved in 16 posters! 

I was moderator at a lunch table on “Holiday Camps and Conferences – Pros and Cons” .    Also gave an invited lecture “Good Care for All “ at the plenary session to close the conference.

Pharmax took us all to the Nieuwe    Kafe for dinner which was good.
We had time to do plenty of sightseeing but sadly have very few photos! 

 

June 30th. Clinical Standards Group. London

We had a good morning meeting with expanding group both Dr Eddie Simmonds (consultant paediatrician in Coventry) and Dr Di Bilton (chest physician in charge of the Adult CF Unit at Papworth Hospital Cambridge) made important contributions.
We have been ages on this task, one reason is that the government keeps moving the goalposts. Most doctors are fed up with a stream of the documents which pour forth from the Department of Health the latest on clinical governance contains little new. We hope to update our 1996 guidelines to produce standards of care and new guidelines which will be approved and “kite-marked” by the National Institute of Clinical Excellence                                                             

July & August. We have each of the boys for a few days. We visit Forbidden Corner with them

The Forbidden Corner is a folly garden located in the Tupgill Park Estate, at Coverham in Coverdale, in the Yorkshire Dales National Park, England. It is open to the public. We visited with the grandchildren at various times.

July 7th. Sue our eldest daughter graduates from Nottingham University                  
Sue obtained a degree in nursing and at the time she was a senior nurse on the  Intensive Care Unit at the Nottingham City Hospital.  

What a star! Despite three children, a home and a husband, Sue held down a very stressful job on the intensive care unit at Nottingham City Hospital and gets a degree as well!  Nick is a very supportive husband.

At this time I developed a detached retina. I had noted slight blurring of the stage during the degree ceremony but did not mention at the time. I retuned home and had to have an operation in Bradford on the 9th by Mr Ishtiyak Mahomed as the Leeds retina men were all on holiday. The operation went well under general anaesthetic. It appeared I had taught the anaesthetist when he was a medical student – so he informed me!

July 31st. Uncle Bill’s 90th Birthday at Rudding Park Hotel

Bill Search was an’s uncle and the senior member of the family and very popular and a very successful businessman.

 

It was a very good party at Rudding Park and enjoyed by all. 

 

Aug. 10th & 11th. Visit Scotland with  Rosie Barnes and Martin Scott
On the first day we visited Royal Hospital for Sick Children, Glasgow. In 2015 the children were transferred to the new Royal Hospital for Children and the hospital became the West Glasgow Ambulatory Care Hospital.  We also visited the hospitals at Paisley and Stirling. The following day we went to Ayr and Dumfries then we flew home from Glasgow.  

One of the reasons for this visit was there had been some dissatisfaction with the CF service in Glasgow and this had been raised with the CF Trust. It was a rather strange  arrangement in that the senior paediatric respiratory consultant, Jimmy Paton, who was responsible for the CF Clinic, did a TB clinic on the same day as the CF clinic and so did not attend his own CF clinic!  Also he lived in Edinburgh which didn’t help matters. All rather odd and unsatisfactory.

Aug. 14th – 21st. Holiday in Wales with the Haines family.

The Richard Evans and family were now living in Menai. We had a good week in Anglesey in pleasant  bungalow. I personally spent much of the time  writing the first draft of the CF Trust’s “Standards of care for cystic fibrosis” which, after many stormy committee meetings in London (which I chaired), was eventually published by the CF Trust in 2001.  It was an excellent document of which we were justly proud and it received a very good reception.

The holiday was very good and we have been back to Anglesey many times, more recently twice a year, for the golf at the HPB at Henllys with George and Mary Dawson.

Sept. 3rd. Clinical Directors Meeting Birmingham
The CF Trust hosted an annual dinner and meeting for Consultants in charge of large CF centres. The purpose was to update them on the activities of the CF Trust. As Chair of the Research and Medical Advisory Committee (RAMAC) I usually gave an account of the medical and scientific activities over the year. 

Sept. 16th. Lecture to Manchester Region Paediatric Club
Invited by the President of that year – Dr Ahuja of Wigan. This was a meeting of general paediatricians in the Lancashire area – my lecture was at 2.0pm. Did not stay for the dinner as I had to be in Sheffield the next day – in retrospect this was a mistake as I was guest speaker.

October 6th. Travel to USA. NACFC in Seattle . Also visited Vancouver and Victoria Island after the meeting    

 This was a good conference and Seattle was an impressive city. Afterwards we visited Vancouver and went to Victoria Island for the day.                   

We had only one small poster in the meeting but it represented 23 years experience! I don’t usually include papers or posters in these Red Books but this is special as it records our experience since we started neonatal CF screening in Leeds in 1975 – the second in the world – the first being 1974 by Giani Mastella in Verona Italy. 

October. 16th – 31st.  All the family in Orlando for 2 weeks
We had a great two weeks with all the family in Orlando doing all the usual things.    A fantastic holiday which Ann devised and arranged.  We had two good sized villas and 4 cars – one for each family so people could “do their own thing”.

Ann made all the arrangements for  this  trip – as she did for every other trip we ever made with either with the family or as part of our CF work.

Nov. 9th. Talk to the Pembroke branch of the CF Trust at Haverfordwest.
One of the very senior lady members of the CF Trust branch, whose name I forget, was involved in our visit. We stayed with one of the local dignitaries Penny, who was the Lord Lieutenant of the county, in her impressive house which was in a wooded estate some distance out of the town.
The meeting was in a pleasant pub and seemed to go well.

Nov. 12th.  Northern CF Club at the Cottons Hotel, Knutsford
This was one of the regular meetings of our club which remained popular with colleagues.    Meeting at 4pm, drinks at 6pm and dinner at 7pm has proved a good formula since I started the club.

Nov. 16th. Grimsby North East Lincs CF Trust Branch Meeting

A very good well-attended meeting. Dr John Davies, who was with me in the Seventies as a senior registrar, was the consultant paediatrician in Grimsby.  With Jim Sarsfield, he published one of the first papers upon CF from Leeds in the mid-seventies relating to two children who had CF but negative sweat tests. John was a very efficient Senior registrar and started pancreatic function tests when at Seacroft with the help of Dr Sydney Smith our excellent radiologist

Nov. 23rd. The annual CF Meeting at the Royal Society of Medicine.
This was the annual CF meeting at the Royal Society of Medicine which Prof. Tim David of Manchester has organised since the mid-Eighties. They are very good. Ann and I stay at the RSM the night before and have a leisurely breakfast before the meeting. This was the last occasion on which I gave a lecture at the meeting and on this occasion it was an “An update on intestinal strictures”.  I had been closely involved in the fibrosing colonopathy situation since the first description in the early Nineties by Ros Smyth from Liverpool.

Littlewood J M.Update on intestinal strictures J Roy Soc Med1999JunSuppl 37:41-9. https://pubmed.ncbi.nlm.nih.gov/10472252/

Dec 8th.  Return from the Executive Committee in London
I returned from the CF Trust Executive last night and feel uncharacteristically depressed this morning.  I think the recent rejection of both the antenatal and neonatal screening by the National Screening Committee have convinced me that there is are major problems with the system. The NHS is so grossly underfunded the Department of Health’s main aim seems to be any excuse to avoid spending money.
Looked at objectively, the DOH commissioned the recent health technology review “Screening for Cystic Fibrosis” which was published in June 1999. It cost the taxpayer £50,000. Before printing it was refereed by number of national experts who found it satisfactory and indeed praised it. It  is the most comprehensive review of CF screening yet produced, containing 105 pages and 455 scientific references.  Yet, within a few days of publication, a combined meeting of the Child Health and Obstetric Groups of the National Screening Committee rejected its recommendations. 

Dec. 21st. Ann and I attend the St James’s CF Unit Christmas Lunch
It was good to see so many of the staff we have known for so many years and hear how the patients and the research were progressing.

Dec. 22nd. We visit the Adult CF Unit at Seacroft Hospital

This unit now has over 200 adults with CF on full care and is the largest  adult CF Unit outside London – only the Brompton is larger . Dr Daniel Peckham has been appointed a second consultant to work with Steven Conway. The visit was to see a very impressive new CD program which Daniel has made for CF management. They are keen that the CF Trust is aware of the project. I promised to keep in touch and mentioned it to the Publications Committee at Bromley. We will discuss again when it is completed.

 

1999 Christmas at Bardsey with the family

1999  A Millennium New Year’s eve in Bardsey with the neighbours at Jan and Ken Harrison’s

  

                                                 So ends 1999