Struggles and Victory of CJD Victims in the United Kingdom
Noel Baldwin
I will start now with the care for Patrick.
I am Noel Baldwin, father of Patrick John Baldwin who died of CJD on the
14th of December 1992, as a result of child hormone treatment when he was
a child.
First I thank you all for inviting me to speak here today. I bring with me to you the sympathy from families who have lost loved ones as a result of CJD in the United Kingdom.
My wife Janet sends her sympathy and sincere apologies for not being with you today, she has severe arthritis and the airplane flight would be too much for her.
I have been invited to speak on Patrick's case and our fight for CJD justice
Patrick was born on the 17th of February 1962, he weighed 7pounds 2 ounces, at birth he was a perfectly healthy baby, over a period of one year we noticed that Patrick was eating well but that he was not growing at the rate that he should have been. We visited the doctor with Patrick, he examined Patrick and could find nothing wrong with him.
In due course arrangements were made and in October 1963 Patrick entered Scartha Road Hospital Grimsby for a period of two weeks for health checks to be carried out on him, he was eating well but he was not growing, they could find no health problems with Patrick.
Patrick never visited the hospital after that he was a very strong healthy boy.
Although very small it never bothered him, he played football, cricket, went fishing, and had a great interest in other sports. Patrick was always a very happy boy, he attended Castle Hills School Gainsborough.
Mid 1976,the school doctor sent for my wife Janet and myself she told us that she was concerned about Patrick's height.
She informed us that there was a professor in the Sheffield Children's Hospital who specialized in child growth hormone treatment.
That was the first time that we ever heard of growth hormone treatment, in due course we were sent an appointment to take Patrick to the Children's Hospital in Sheffield to see the professor.
Patrick went into the hospital for tests to be done to him to establish if the treatment would be beneficial for him.
Patrick started having the treatment in October 1977. He was then 15 years old
He had three injections a week, Monday/Wednesday/and Friday at the John Coupland Hospital Gainsborough. This was to save him having to go to Sheffield three times a week for the treatment, which would have been a round journey of about, 150 kilometers.
We as parents were never told of the risks involved with this treatment, as far as we were concerned this treatment had been tried and tested
To our sorrow and Patrick's we now know that it was a case of the blind leading the blind I say this with no disrespect to the blind.
Patrick served his apprenticeship at Rose Brothers of Gainsborough.
He then joined the Royal Navy in 1983, he was progressing very well, he enjoyed life in the Royal Navy, he was a leading marine engineer his future was very bright and Patrick was set to advance very rapidly in his career. He had no health problems and was a very strong young man until August 1991.
Patrick's problems started off with a non-stop cough and he was unsteady on his feet in August 1991. In October 1991 he was attending the Royal Navy Hospital Hazla in Portsmouth.
It was in late November that his mother and myself found out that Patrick was ill, Patrick was trying to keep the problem from us as he did not want to worry us.
Patrick got married in 1985. He has two daughters Zara and Nicola. Patrick was divorced before the clinical signs of CJD started to show
The following morning after we found out that Patrick was ill we drove to Portsmouth, on arriving we found Patrick could walk but was very unsteady on his feet, when he walked he had to keep near to a wall, if he did fall he would not be able to pick himself up as he had very little control of his hands. When he walked he had to keep his hands up for balance, to get up the stairs he had to get on his hands and knees, to come down the stairs he had to sit on the steps and work his way down.
Patrick also had double vision he wore a patch over one eye changed to the opposite eye every other day. He had a persistent non-stop cough.
December 1991Janet and myself visited Patrick every Thursday and Friday during this period Patrick was steadily getting worse he was still attending the Royal Navy Hospital. Patrick was examined and x-rayed for every known disease all the tests showed clear by the Royal Navy Hospital.
We asked the Royal Navy if Patrick could come home to us when they had finished all their tests, as we wanted to look after Patrick at home, they agreed to this.
On the 21st of February 1992 we went to Portsmouth to take Patrick home, by this time Patrick was in a wheel chair, he was unable to attend to personal hygiene or get in or out of bed by himself.
His speech was getting worse. His hearing was good and he was very alert.
Unable to stand chair bound, requires a lot of help when getting dressed, needs help in the toilet, difficulty using cutlery. Can clean own teeth, good appetite and some pain in his legs.
All the family used to take Patrick out for walks in his wheel chair in turn, also Patrick's friends and some times they ended up in the club which he liked, he was also taken to the football games.
March 9th, 1992 Patrick hands getting very shaky he is unable to control them difficulty speaking. Difficulty using the water bottle.
March 12th, 1992 not very well today sleeping a lot seems very tired.
March 14th, 1992 a good day for Patrick
March 17th, 1992 Patrick had a condom sheet system fitted the bag to be changed every Sunday. This was not a success, as the condom would keep coming off. We then had to was hand change Patrick also change the bedclothes.
We found that there was a fault on the condoms. There was no glue on them so of course there was nothing to keep them on
March 27th, 1992 catheter fitted by doctor proctor this worked very well right to the end. From this date Patrick's blood was at times very dark with some debris showing at times also a lot of blood showing, this again carried on until Patrick died.
April 10th, 1992 Patrick's bowels not opened for nearly five days manual evacuation of Patrick's bowels given by the nurses with difficulty but a good result
April 16th, 1992 excellent results from manual evacuation of the bowls up to Patrick's death.
Janet and myself went to John Coupland Hospital for training in physiotherapy. This was so that we could give Patrick physio at home as he had to stop going to the hospital, because it was making him very tired traveling there and back,
We also had training on the use of a suction machine to clear Patrick's mouth out. We had a turntable to spin him from bed to chair and chair to bed; we also had a hoist to lift him out of bed. Also in the in the use of the gastrostomy machine that pumped Patrick's drinking water, foods and medicines into his stomach.
In may 1992 Patrick was fitted with a gastrostomy machine because he could not swallow any foods or liquids.
June 1992 a new problem of frothing at the mouth, excess secretions because of his almost complete inability to cough at this it was difficult for him to clear secretions.
At 4:30 on Monday the 14th of December 1992 Janet called me to say that Patrick looked to be dead.
I came down and on examining Patrick there was no pulse reading his body was warm. But his nose was going cold. I telephoned the doctor who arrived very quickly on examining Patrick she pronounced him dead.
In late 1991 when we became aware of Patrick's illness people in government and the government health service, would not speak to us or to our medical service.
We carried on for some time with no knowledge of what was happening,
Eventually I made contact with people such as Mr. Alan Watkins on a correspondent for today newspaper. Alan was a great help to me with information about CJD.
Mr. Body our solicitor Mr. David Body was very helpful and all his staff in the office done a lot to keep us up to date .I also passed on all the information that I was acquiring from my resources to them.
During this time i was working quite a lot with Mr. Body checking papers that we were putting together for the impending court case.
By now Janet and myself had been contacted by families who had their loved ones suffering with CJD. We gave them all the information that we had,we are still in contact with these people.
We have visited many family's homes to help as much as we could. I would not want to see families left in the situation that we were put in for lack of information about CJD.
Because I can tell people that has never watched one of their loved ones die of CJD. That they have not a clue of what it is like to watch some one that you love die such a horrible death from a disease that very little is known about. The people present here to day that have lost loved ones to CJD, will really understand what I am saying.
I have over the years been involved with Dr Harash Narang who after I contacted him was a great help to me and my family over the years, when I first contacted Dr Narang, he explained in detail and in words that I could understand, all about CJD and BSE
Dr Narang worked for the government on research into those diseases. Yet he was sacked for giving the warnings of the problems that we are having today he gave warnings of the things that are only been made public today
those things are covered in his book the link .what upsets me greatly is if Dr Narang had been allowed to carry on with his research. he may have had a treatment or a cure for CJD.
He perfected a urine test method in 1993 which again was never recognized,
We have now formed [the CJD foundation limited] this is registered as a charity, the aims of the foundation are to give up to date information on research into CJD/BSE and many other diseases, also to set up local groups of people in their own areas so that if they wish they can speak to each other.
Information will be given on the Internet, telephone and by post. People will be able to make contact with the foundation by e-mail, fax, or post.
Membership will be ￡10 for ten years membership in other word, ￡1 per year or ￡20 family membership for ten years. There are no other charges all postage etc are free, there is no salaried staff all time is voluntary, membership is international we already have had enquiries from other countries.
I mention this because it may be of help to you if you decide to set your own group up. you may have already done so.
When Patrick came home on the 21st of February 1992.that was the first time that we were told that he was suffering from CJD. The Royal Navy told us but they did not know anything about this disease. And they were finding it very difficult to get information or medical help from the national health department.
In January 1992 the Royal Navy sent Patrick to the National Hospital for Nervous Diseases at queens square London. the Royal Navy had great difficulty getting the results of the tests from them. They diagnosed CJD but Janet and myself, were not given this information until his inquest in November 1993.
That is when we were officially told of what Patrick died from the people in authority did not want to know of us or to give an information to us. They were more interested in protecting the export of British beef and keeping any information of CJD and BSE from the public at large.
Our Doctors Mr. and Mrs. Proctor were given no medical help from the National Health Department. Neither were the Gainsborough twilight nursing service but they all done a marvelous feat of medical care and made Patrick's life as comfortable and as free from pain as possible as it was to and that was without the medical help that they should have been given.
Patrick knew that he was going to die we often discussed this when he could talk. We had a solicitor visit Patrick's brother, Michael's house in Havant near Portsmouth. For Patrick to make his will. after he had done this he felt much better.
He said to me well dad at least you can make all your arrangements, when you know that you are about to die.
Patrick bore no grudges against the people who started him on the treatment, given the fact that they knew that they had problems with it. He asked me to find out why it happened and to fight for his two daughters Zara and Nicola.
This I promised him that I would do until the day that I would die.
We were watching Patrick die a horrible death, yet outside of our local medical people no one else wanted to know us or help with medical advise as we knew so little about this man made disease,
In February 1992.when Patrick came home, I contacted the Lincolnshire Echo Newspaper. They wrote an article on Patrick's problem .the reason that I contacted the newspaper was because no one in authority would give me any information on CJD or medical information to help to make life more pleasant for Patrick.
Also they were not given any information to the doctors and nurses who were treating Patrick. Which I think was a total disgrace, to let people down in their own profession in my opinion is as low as one can get.
After the article appeared in the local in the local paper I also contacted the Yorkshire Television Company. They came to our house and done an article which created a great interest in Patrick's problem and CJD, as the problem of CJD had been kept hidden as much as possible for the public. Patrick was filmed in bed by Yorkshire Television after this was shown.
We were then contacted by many television companies who wanted to do articles on Patrick, also television programs like [News Night] [World in Action] and many others also a German company. We were contacted by national and Sunday newspapers also many foreign papers worldwide and many magazines.
Over the length of time that Patrick was ill I spoke to every one in the media that wanted to do articles on Patrick many people such as the Lincolnshire Echo and the Yorkshire Television. Lincolnshire Radio. As well as other radio companies came back many times to do articles on Patrick, we never refused to speak to any one in the media because the people in authority did not like the bad publicity that they were getting.
What I would also like to state is that we never asked for any payment and never received any payment or expenses from any one of the people that we spoke to in all the time that Patrick was ill and after his death.
At the start when the media contacted me to speak I would ask them what knowledge they had of CJD if they said that they had none. Then I would ask them to do some research and then come back to me and I would then talk to them.
My reasons for that was that they had the resources to get information and they would call back after a time very pleased that they had information for me. I got quite a lot of information by this means.
The second reason was that I was determined that one day I was going to prosecute the British government and I had to make sure that what the papers printed was true because we were been watched by people in authority who would have liked to make little of us also I did not want to make it difficult for our lawyers. By people making false statements, it did not matter about the television companies as they were done live, also the radio that I could control at the time.
I had been looking for a solicitor who had some knowledge of CJD.
I came into contact with mar David Body solicitor and partner of Irwin Mitchell solicitors.[Sheffield] who had clients of his die of CJD.
In December of 1991 I visited Mr. Body at his office in Sheffield and had a very long discussion with him.
When Mr. Body's clients died their legal aid then stopped. so it was then impossible for them to take their cases to court.
I went back in late December to Mr. Body to fill in the application forms to apply for legal aid on behalf of Patrick. this was done and application was received in London on the January 5th, 1992 I came up against many problems with this application because they did not want Patrick to receive legal aid, for fear of the case getting into court.
Legal aid was finally granted after a long fight on the October 22nd, 1992, which was a very long time to process legal aid.
When I made the application for Patrick's legal aid I also filled in application forms to make a claim on behalf of Patrick's two daughters to be sent in when Patrick died. that then was going to keep the case going. the problem up to Patrick was that there was no one with children died.
When Patrick died we got legal aid on behalf of the two girls within two weeks of his death. but of course a lot of publicity had been done by then.
From December 1991 I spent many hours and days filling in paper work for Mr. Body. it was surprising the amount that was turning up from government solicitors. I mention this at that time I was in full time employment and we were often up most of the night when Patrick was ill.
In mid 1992 I went to London with Mr. Body to a meeting at that meeting there was several lawyers who had clients suffering from CJD and some had clients that had already died of CJD.
At that meeting we formed a steering committee. one was responsible for giving press releases. Others were responsible for interviews meeting medical people every one had a job to do.
At that meeting it was agreed by all that Irwin Mitchell solicitors Sheffield, and smith-Levelly solicitors of Swansea would fight the cases in court if not there was the possibility of small companies not having the experience of dealing with such big cases in court. losing for their clients and perhaps for every one else people could have their own solicitors, which many did to liaise with Mr. Body and Mr. Llewllyn,this worked well.
As I have stated in the time from December 1991 to December the 14th 1992 when Patrick died. there was a lot of hard work looking after Patrick, dealing with the media, and keeping in contact and working with our legal team.
When Patrick died we requested a postmortem to be done on Patrick. which the coroner agreed to the reason we asked was because if a postmortem was not done then it could only be supposed that Patrick died of CJD so we would not have any proof that Patrick died of CJD.
Patrick's inquest we again had many problems with dates been cancelled due to people whose evidence was vital because they never spoke or never had to until then. there was always one out of the country. eventually Patrick's inquest was held on the[3rd and 4th of November 1993 at the Lincoln Castle Crown Court by jury
The verdict given at Patrick's inquest was medical misadventure that was the verdict that we wanted. we could now serve notice of an intended prosecution on the government.
After Patrick's inquest I attended other inquests of people that died of CJD to gather as much information as possible.
I spoke at several briefings that we had at the House of Commons for government ministers and members of parliament. the briefings were cross party and non-political.
The meetings were attended by the press and television. we got a lot of publicity from this for our fight.
We through the meetings had it brought to the floor of the house of commons, where it was debated by the house, that was the first time that deaths from
CJD by people who received child growth hormone treatment was debated in the house.
Again this helped our case greatly at least now it was been spoken about by government ministers and members of parliament.
After a lot of very hard work we finally got our case into court on the[16th of April 1996] by this time there was 17 cases of which Mr. Justice Morland initially examined eight of the seventeen cases of Creutzfeldt---Jakob Disease [CJD] contracted by young people who underwent human growth hormone [hGH] treatment between 1958 and 1985 of these seventeen, sixteen had died from this fatal neurological disease.
Litigation was commenced after the department of health refused a public enquiry into the cases [in Australia a public enquiry was held]
A further four cases were added to the proceedings during the course of the hearing making twelve lead cases in total.
The case was heard in the Royal Court of Justice London, it went on for five and a half weeks.
I traveled to London every day to the court hearing at my own expense, as I wanted to gain the full knowledge of what had gone on in medical research.
Judgment was handed down on [Friday the 19th of July 1996]
Mr. Justice Morland held that the Department of Health had been negligent.
Essentially he found that more should have been done and more quickly, once the Medical Research Committees (MRC) were alerted to the real risks of possible infection. This was done in October 1976 by Dr. Alan Dickinson [an expert in scrapie the sheep disease]
The judge found that by July the 1st 1977 enough ought to have been known to decide that no new children should have been put on the program.
Where treatment was discontinued prior to the 1st of July 1977 those cases were dismissed.
After the court ruling we then started to fight for the people who were outside of the compensation period.
Shortly after judgment was given Mr. Body and the right Honorable David Hinchliffe MP and myself.
We had a meeting at the House of Commons with John Horam government Minister of the Department of Health.
This was to try and get compensation for the people on the no fault compensation plan which meant compensation could be paid but no blame would be apportioned to any one or any department of health.
This was the method used to compensate farmers whose animals died of BSE, I am afraid that we were not successful.
We had also appealed against the court ruling the appeal was a success.
The appeal was heard in the Royal Court of Justice [court of appeal civil division London.
The appeal was heard by Lord Justice Kennedy. Lord Justice Judge and Lord Justice Chadwick.
The appeal was a success and the people were eventually compensated.
Now comes the b cases [known as the walking worried] those are the people who had child growth hormone treatment. But are not shown any clinical signs of CJD.
Those people are living under a great stress not knowing if one day they will wake up with the symptoms of CJD. I am in contact with many of the young people concerned.
We also appealed on behalf of those people and were again successful.
But then the government was going to cross appeal.
By this time we had a change of government from conservative to labor
Again we asked for a meeting with the new Minister of the Department of Health. Mrs. Tessa Jowell MP that meeting was a great success again as the cross appeal by the government was withdrawn this gave us the clear way back to the courts again.
By March 1998 all the cases had been heard and compensation has been paid out to those that claimed.
One young man received three hundred and thirty thousand pounds compensation for that he is living under.
Nearly all the cases have now been compensated there is just a few of the later cases to be settled they will be compensated.
Over the last ten years it has been very hard work but it has been worth every second of the time spent on it.
I have mentioned one young mans compensation.
There was one young woman with three young children who lost her husband with CJD received one and a quarter million pounds as a result of the appeal been successful.
When you are fighting for what you think is right and proper you must never give in. Because at times you will get great knocks. That gets you down and sets you back. You must get up and fight back with venom.
Stick together as a group does not let anyone separate you that way you will win through. That is how we won our case against all odds.
If you wish I can I can expand in greater detail when presenting this material.