The-Latest exposed the scandal of a flag ship London hospital's cover up over a blaze which destroyed 240,000 medical records stored by a private company. (See 'Alarm as NHS files go up in smoke'. The-Latest Community News.). Here Frank Redmond tells the harrowing story of his daughter whose files were among those that went up in flames.
Tess is 15-years-old she suffers from a B12 disorder, seizures mental impairment and severe learning difficulties. She was born in January 1992 and for the first three years of her life she had no problems. One day, without warning, she started fitting.
We took her to accident and emergency at Chelsea and Westminster Hospital. Three times that day she was sent home by the accident and emergency department saying they could find nothing wrong with her. After the third time we insisted that they admit her, she was admitted and spent most of the next six months in hospital.
During her stay in hospital we were introduced to the consultant phenomenon of:
'Don't question me...... I am always right..... even if I am wrong...'.
There were a number of incidents during Tess's stay in the hospital, I relate to one of these incidents here.
One afternoon at about 1pm Tess collapsed on the floor while having a fit, following which she was listless, vomited and drifted in and out of sleep, and had seizures while she slept. We asked the doctor on duty to have a look at her because we thought she was suffering from concussion. "The doctor's opinion was that she was all right". As the day went on we were still unhappy, she did not improve and was having more seizures. The doctor saw her again and pronounced exactly as before "that she was all right". Early that evening we asked the doctor to see her again and this time we asked for a scan in case there was some damage, again the doctor said "that she was all right" and that she did not need a scan. When the night staff came on duty we complained to one of the nurses who spoke to the doctor again, she again refused the scan saying that there was nothing wrong.
At midnight Tess was still the same, we spoke to the nurse again, she called the doctor and insisted that there was something wrong and that Tess needed to be scanned. At 1am twelve hours after the fall Tess was scanned and found to have two hairline fractures to her skull.
After months in hospital the doctors had no diagnosis, Tess was still very ill all blood and urine tests came back normal. My wife by accident, during a hospital open day, came across a unit that was treating children with B12 deficiency, she insisted that Tess be referred to this unit, her theory being; we have tried every other test why not try this one. Tests were carried out at the Unit and there were indications that Tess had a B12 disorder, this was later confirmed by Dr Bhatt. Tess was discharged soon after this from the hospital, and a follow-up appointment was made for her to be seen by Dr Bhatt in the B12 Unit in January 1996.
Before Tess's January appointment came about the B12 Unit was suddenly closed without any warning, or alternative treatment centres in place for patients attending the unit.
Rumours at the time suggested that a discovery had been made by the unit, of a link between B12 and Autism, this was leaked to the press, and was responsible for the closure. Dr Bhatt has always denied that he was responsible for the leak, but would never confirm whether or not he was involved in any work involving B12 and Autism. Today, twelve years later clinicians in the United States and Australia have confirmed that they have had some success treating Autistic children with B12.
At the time a parent pressure group was formed, to campaign for the re-opening of the unit.
The reasons the hospital gave for the closure of the Unit have all been discredited, but to this day the Unit still remains closed. The public campaign received a lot of publicity both local and national.
An example of the Hospitals modus operandi is shown when the hospital asked the Institute of Child Health to carry out an Inquiry into the B12 Unit. This was headed by two consultants from Great Ormond Street Children's Hospital who predictably found in favour of the hospital, in what was a very biased and narrowly focused investigation. All sorts of spurious allegations were made, patient safety, research without ethical committee approval, and that lumber punctures were being carried out in the dark. Because of the involvement of eminent consultants and fears of what the system might do, many parents gave up the fight.
The small amount of B12 treatment that Tess received before the unit was closed made a noticeable difference.
When the B12 treatment stopped Tess went back to having many more fits, fits that were violent, unpredictable and terrifying to watch, that incapacitated her for days at a time.
Between the ages of four and eleven years, Tess had no social life, she was banned from the school bus despite the supervision of two adults, she was excluded from her special school, and because of her behavioural difficulties remained out of school for three years.
There was nothing we could do except put pressure on the hospital and the Department of Health, to reinstate her B12 treatment, because we as parents could see the positive affect it had on her behaviour and seizures.
In 1999, after a campaign which involved demonstrations, media coverage and publishing on the Internet the Health authority decided to allow Tess to be seen by B12 expert Professor Victor Herbert from the United States. Before he arrived in the United Kingdom he was sent a copy of Tess's extensive medical records, from this he corresponded with Dr Bhatt and ordered a number of tests. On arrival in the United kingdom Professor Herbet saw Tess, his diagnosis confirmed Dr Bhatt's original diagnosis, and advised that Tess should be started on B12 treatment without any further delay.
Tess received B12 injections for a short time afterwards, which were purchased and administered by the staff at Chelsea and Westminster Hospital under Dr Bhatt's supervision.
We, the parents, were then trained by the hospital staff to give these B12 injections, they felt (and we agreed) that Tess was becoming so anxious at having to visit the hospital for her injections that it would be better for her to have them at home. The training involved us in a number of sessions at the hospital and we were monitored by hospital staff at home. Although we were very, very nervous to do this, we agreed, as it was going to be best for Tess.
But, on the 13th April 2000 the injections stopped again.
In a meeting, Tess's neurologist at Chelsea and Westminster Hospital was told by Dr Melaine Smith Public Health Director Kensington and Chelsea PCT that he was responsible for Tess's B12 care, and not Dr Bhatt (who was the B12 expert). The consultant responded saying that he could not take responsibility for something that he "knew nothing about".
Despite this, the hospital refused to deal with Dr Bhatt, saying that because he was not an NHS consultant he could not be given a contract to treat Tess.
So in effect, the hospital were saying, that a consultant who by his own admission did not have the expertise to provide B12 treatment to Tess, should provide the treatment by virtue of the fact that he was an NHS consultant.
Whereas, Dr Bhatt who is an expert in B12 disorders, with about thirty years experience, because of a European order, (European Specialist Medical Qualifications Order 1995, Statutory Instrument 1995 No. 3208 - HSG(96)24)" did not qualify to be an NHS consultant, the Chief Executive would not allow him to treat Tess, despite the fact that he was an expert in the disorder and far better qualified than any consultant employed by the hospital. The hospital were also aware that Dr Bhatt was the only B12 expert in the UK. Chelsea and Westminster Hospital and the Health Authority have consistantly failed to find another UK expert.
Whilst Dr Bhatt did not qualify to be an NHS consultant, it did not prohibit the hospital giving him an "honorary contract" to provide B12 treatment to Tess. The hospital refused him an Honorary contract in this case, despite the fact that he had an honorary contract previously with the hospital when the B12 Unit was open, to treat B12 patients. It was Dr Bhatt's own choice not to apply to become an NHS consultant, he was not prohibated on the grounds of specialist expertise or medical qualifications.
Because the National Health Service refused to provide B12 care to Tess and stopped paying for her B12 drugs. Dr Bhatt In order to maintain Tess's B12 care provided his services and B12 prescriptions free of charge. He has been providing this service to Tess for nearly eight years.
We pay for her injections at the rate of £67 per ten injections, this equates to a cost of £6.70 per week to provide Tess with the B12 drugs she needs, this is a cost the Health Authority are refusing to pay.
Like all medical treatment, we feel as do Tess's doctors, that her B12 treatment needs to be monitored regularly.
Dr Bhatt did not, and does not, have the facilities to do this, and despite Dr Bhatt telling Chelsea and Westminster Hospital's Chief Executive that the hospital had all of the facilities he needed to effectively monitor Tess, the Chief Executive refused to allow Tess to be admitted for these necessary tests.
From 2000 to 2003 the sustained and consistent lobbying to reinstate Tess's B12 treatment at Chelsea and Westminster hospital under Dr Bhatt did not make any headway, despite Tess having the support of her consultant neurologist. What the hospital Chief Executive did do, was to put pressure on the neurologist to remove Tess to Great Ormond Street Children's Hospital, however, he refused, saying that Great Ormond Street did not have the necessary expertise and that she should be under Dr Bhatt's care for her B12 disorder.
On the 30th October 2001 the hospital Chief Executive wrote to Tess's GP stating that Tess:"...may not be receiving appropriate care...", because of the stance taken by the consultant neurologist and the parents. To add weight to her letter and pressure the GP she stated, "On advice from the General Medical Council Therese is to be referred to a specialist paediatric unit..." this statement was a deliberate misrepresentation of the truth. The General Medical Council is a licensing body, it does not advise on the treatment of individual patients, the Chief Executive Mrs Lawrence, a Chief Executive of many years experience and an employer of staff licensed by the General Medical Council, would have been aware of their role and responsibilities.
For not complying with the wishes of the Chief executive and the Medical Director of removing Tess from the hospital, the consultant neurologist was then subjected to what could only be described as harassment. The Medical Director Dr John Collins and Non Executive Director Professor Sir Leszek Borysiewicz head of Imperial College School of medicine, made a formal complaint about him to the General Medical Council on the 10th February 2003. They were not able to show any evidence that the neurologist presented a risk to Tess.
There were other complaints to the General Medical Council, but in the end The General Medical Council agreed with the neurologists's stance, and found he had no case to answer.
The papers that are now available regarding the neurologist, point to a systamatic attempt to discredit him and destroy his career, it is fortunate for Tess the Chief Executive Mrs Lawrence and the Medical Director Dr Collins, did not get their way.
On one occasion, when Tess was very ill, fitting, and could not even stand up, she was admitted to Chelsea and Westminster Hospital, the admitting consultant Dr Nicola Bridges refused our request and the neurologists request to contact Dr Bhatt (Consultant notes 27/11/2002). We contacted Dr Bhatt directly and he told us to give Tess a B12 injection, which we did. Within two hours she was discharged and was able to walk out of the hospital. The doctor discharging her noted that she was no longer fitting. I asked and received a copy of the notes from Tess's medical records of that days admission, and it was fortunate that I did. Following this admission the hospital mounted an internal inquiry, it was clear from the onset that this inquiry was to discredit Tess's neurologist and us.
The complaints were that: we had given Tess's a B12 injection before staff could contact the doctor, that we had removed Tess from the hospital without the necessary permissions, that Tess's neurologist did not co-operate during the admission.
These complaints were downright lies and when evidence to the contrary was produced the inquiry mysteriously folded. A couple of months later I made a request to access Tess's medical records and found that the pages that I had received copies of on the day of the admission had been removed. Despite the treatment I have described here which is a very brief account of what happened to the consultant neurologist, he did not waver in his support for Tess.
For my part during the period 2000 to 2003 I campaigned against the hospital by demonstrating, writing on the Internet, writing to the hospital, putting up posters in the hospital, I also made a second formal complaint to the Ombudsman, a previous complaint was made in 1996 that complaint was partly upheld by the Ombudsman.
The 1996 Ombusman investigation concluded that following the closure of the B12 Unit Tess was a patient in care at Chelsea and Westminster Hospital and that they were responsible for her continued B12 treatment.
In his report of the 15th December 1997 the ombudsman wrote:
"It is most regrettable that she has been the victim of prolonged, and unresolved, contractual and clinical arguments. There is no question that Miss Redmond has suffered hardship because of the failure to identify acceptable alternative treatment for her"
My second complaint to the Ombudsman (December 2000) was that; satisfactory arrangements for Tess's treatment had not been made following on from the previous recommendations made by the Ombudsman in his 1997 report.
Meanwhile my dealings with the hospital ended up in the High Court for four days in 2003. The charges against me were harassment. One aspect of this case was: The Chief Executive told the court that in August 2002 I burst into her office and shouted at her, she said she felt threatened and in fear for her safety.
It is to this day a mystery to me, as I always thought that if someone was in fear for their safety the first port of call would be security or the police. But instead she asked me to wait outside her office. she then spent the next half an hour on the phone to the Health Authority, the Ombudsman, and the Department of Health, not what you would expect from someone feeling threatened and in fear.
What actually occurred: On the 16th August 2002 the Chief Executive was having a meeting about Tess's care, from which she was trying to exclude me. This was a meeting I was entitled to attend, in my High Court case in 2003 His Honour Judge Chapmen stated "Mr. Redmond as Tessa's parent is entitled to be present at any meeting at which the treatment to be offered to her is discussed, in other words where clinical issues are discussed". I went to the Chief Executive's office to ask if I could attend the meeting, she asked me to wait outside which I did for half an hour, she then called me into the meeting.
During the court hearing the hospital tried to make an application to take Tess into care, but social services would not cooperate because the hospital were unable to show any evidence that Tess was at risk.
After the court hearing the Chief Executive tried again to get child protection proceedings taken against us by complaining to Social Services that Tess was at risk. One week after, the Chief executive of the hospital complained to Social Services the Chief executive of the Primary Care Trust made a similar complaint. Social Services had no choice but to carry out an investigation.
This investigation found that there was no evidence to support the complaints made by the Chief executive's of the Hospital and the Primary Care Trust and that Tess was not at risk.
The following is an extract from the Social Services report (30/09/2003:
"...I find myself in agreement with all those whom I interviewed - and who know Tessa and the parents better than I do - that the care provided is warm, sensitive and appropriate to her needs despite difficult circumstances. The test for a child protection conference is "is the child at continuing risk of significant harm?" In my judgment, and as chair of many conferences over the years, on the evidence that I have heard, that is not the case for Tessa Redmond".
This was the Chief Executive's second attempt to get Tess taken into care.
The ruthless and bullying tactics used speak volumes about the type of person we have today running Chelsea and Westminster Hospital. To put a family coping with the stress of looking after a sick child in fear of losing that child, for no other reason than to rid yourself of a responsibility, must in anyone's book be the ultimate dirty trick.
Many issues came out in court, too numerous to go through in this short account.
The court found against me and issued a court order which is still in place.
We were also threatened by the then Deputy Chief Medical Officer Dr Sheila Adam that if we did not cooperate with her she would also use Social Services, when we refused to cooperate she backed down.
In May 2001 the Ombudman agreed to investigate my complaint,which was,"that the arrangements made by the Trust, (Chelsea and Westminster Hospital) since the previous investigation, for monitoring and treating Tess for her B12 disorder have been and remain unsatisfactory".
After a meeting with the Chief Executive of Chelsea and Westminster Hospital Mrs Heather Lawrence and Medical Director Dr John Collins, the Ombudsman decided not to investigate my complaint, and instead embarked on a three year investigation of the doctors that supported Tess, Tess's B12 condition and us. Neither we nor the doctors were told of the change in the investigation, and only found out when the report was published, we were given no opportunity during the investigation to defend ourselves.
Of further interest, at the same time that my complaint was under investigaton by the Ombudsman the Chief Executive of Chelsea and Westminster Hospital and the Ombudsman were also members of a committe chaired by the Chief Medical Officer Professor Liam Donaldson.
In her report the Ombudsman leveled very serious allegations against the Neurologist and Dr Bhatt and reported them to the General Medical Council. The General Medical Council later threw the complaint out.
The ombudsman's report also accused us of tampering with Tess's urine samples, when we produced evidence that the sample in question was not handled by us but by Great Ormond Street, she refused to amend her report.
Tess's Great Ormond Street nursing records, for the day on which she was admitted for the taking of the samples we were accused of tampering with, have also mysteriously disappeared. On the 22nd October 2003 Great Ormond Street's legal advisor wrote "I can confirm I have been unable to locate any nursing documentation relating to your daughter".
The Ombudsman's so called experts said that Tess did not have a B12 problem despite having access to test results to the contrary. Their opinion was that the results were wrong, because the sample taken for the test was not adequate, yet, SIX - NHS hospitals confirmed the sample was more than adequate. In fact the inventor of the test (Dr Schilling) has also confirmed to us that the sample was more than adequate, the ombudsman and her experts were not interested in amending their errors.
One of the Ombudsman's experts Dr Peter Robinson, who is an NHS consultant in Glasgow, said that there were a number of B12 experts in the country and that our contention that Dr Bhatt was the only one in the United Kingdom was wrong. When he was asked, by me, to produce his list of experts, he refused. But when he was subsequently asked to name them by the Health Authority he could only name one; a Professor Leonard at Great Ormond Street Children's Hospital. Who was not an expert, and who for six years, had refused to answer our questions, about the number of B12 patients he had treated, the treatments he had used and the outcome of treatment. Professor Leonard also refused to have a meeting with Dr Bhatt, whose B12 expertise was acknowledged by Professor Herbert from the United States who saw Tess in 1999.
Following the Ombudsman's report a Judicial review hearing found against us, Dr Bhatt and the Consultant Neurologist. Chelsea and Westminster Healthcare NHS Trust took part in the Judicial Review as an interested party. Mr Justice Henriques, refused to allow them to put papers into court, that had no other purpose than to try and discredit me. It is interesting to note here that Chelsea and Westminster Healthcare NHS Trust were attempting to help the Ombudsman in this case, which was also against their own consultant. The Trust's attempt to help the Ombudsman against their own consultant, would possibly have been a breach of the consultant's employment contract, it would I suspect among other things, have been a breach of the implied term of trust and confidence.
An application was made to the Court of Appeal.
The Court of Appeal listed the hearing for two and a half days. But after only one day (22nd November 2005) three of the most senior law lords found in our favour, and the Ombudsman's report was quashed, In his conclusions Lord Justice Sedley stated, "...the Report on Mr Redmond's complaint against the Trust exceeded the Commissioner's statutory powers, not technically or marginally but so substantially as to vitiate it in its entirety", (Redmond  EWCA Civ 1578).
Transparancy and Openness
Transparancy and openness is something that seems to cause Chelsea and Westminster's Chief Executive a problem, there were times when we were denied access to meetings about Tess's care, pages from her medical records went missing. Thirteen crates of the B12 Unit's papers and equipment including Tess's B12 medical records disappeared without trace.
One example of a disregard for transparent and open dealings indirectly relating to Tess, was the way in which board meetings were held. Board meetings were not held in accordence with health service guidelines or the statutory framework, after I complained to the NHS Executive the Chief Executive Mrs Lawrence gave an undertaking that they would comply. Twelve months later she had still not complied, and as a consequence had to submit the Trust Board agenda and minutes over the course of the next twelve months, to the NHS Executive, so as to demonstrate that private sessions of the board are undertaken in accordance with the statutory requirements.
In 2003 Dr Bhatt placed Tess on weekly B12 injections, we monitored and documented this change for six months. The change to weekly injections reduced Tess's seizures by 80%, there was also a remarkable change in her behaviour, this was confirmed by her teacher. Since going on weekly injections and to date there has been no reoccurrence of the fitting bouts that prior to the weekly injections had the consequence of incapacitating her for three to four days at a time. Also prior to the weekly injections Tess had virtually no social life because of her behaviour and fitting, now she is able to go to restaurants, shopping, boat trips, trips on the London Eye, Legoland, museums and art galleries with her friends, she also goes to an after school club three days a week.
For a number of years Tess was deliberately put at risk and caused unnecessary suffering by the Chief Executive and Medical Director of Chelsea and Westminster Hospital. Her current quality of life is only because two doctors decided to commit career suicide rather than capitulate to executive bullying and harassment, and subject a disabled child to unnecessary suffering. They had the courage to stand by what they believed was right for a very vulnerable patient, it is thanks to them that Tess now has an great quality of life.
When the B12 Unit was closed Dr Bhatt was locked out of his office he was never allowed access to the B12 files he built up over many years, now all of these files have mysteriously disappeared including Tess's B12 files. All of the allegations made when the unit was closed, about safety and research have subsequently been shown to be untrue.
We have battled to get Tess the very best treatment to enable her as much as we can, which is what any parents would do. This unnecessary confrontation has taken us 12 years.
Simply put, what we want for Tess is that she has access to correct, and relevant medical treatment, delivered to her by experts to have a true understanding of her needs and who will work with us to ensure that she receives optimum care. Tess's B12 treatment does not cost a lot of money, but for some reason bureaucrats in charge of a hospital consider it better to waste OUR NHS money on bureaucrats, solicitors, barristers et al, to stop Tess accessing HER hospital.
Can somebody explain to us as we still don't understand why treatment costing £6.70 per week is such a major issue?