We love Tess dearly, she is a wonderful daughter and sister, there are no words that do justice to the many ways she has, and continues to enrich our lives. The last twelve years have been made unnecessarily difficult for Tess and for us as a family, but we are determined to continue our battle until she receives the level of care experts have confirmed she needs.
Tess suffers from a B12 disorder, severe learning difficulties seizures and mental impairment, her mental age is that of a five year old.
She was born in January 1992 and for the first three years of her life she had no problems. Then on the 4th May 1995, 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:-
There were
a number of incidents during Tess's stay in the hospital, I relate to
one of these incidents here.
On the 5th August 1995 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.
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.
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 examined 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.
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 procedurally 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. To date the Chief
Executive has 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, without our knowledge, 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 facts. 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 have been 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 accusations 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 previously received on the day of the admission had been removed. The treatment I have described here is a very brief account of what happened to the consultant neurologist, and despite this 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"
Meanwhile my campaign against 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.
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. This order did not give the hospital what they most wanted, that is to stop me writing and protesting and using internet sites to highlight the way Tess has been treated. In fact what the court did was reinforce my right to protest. The Court Order basically means that I am not allowed to enter the hospital without a reason, e.g. I cant walk in off the street and have a coffee in their coffee shop. The hospital's now use this Court Order as a means to discredit and threathen me, when I highlight the way they have treated Tess.
However, 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 [2005] EWCA Civ 1578).
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. Twenty 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 2004 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.
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 bureaucracy, solicitors and 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?
Frank Redmond