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Lorayne Buckley

12.30 pm

Mr. Alan Meale (Mansfield): I want to talk about the case of the late Lorayne Buckley, a former constituent of mine, who I believe died because of inappropriate treatment and wrong assessment of her medical condition while an NHS patient. Although lengthy, the case is fairly straightforward.

Lorayne Buckley was born on 21 December 1956, and she was a normal, healthy baby. Aged approximately three months, she was injected with a vaccine against whooping cough by her local doctor--an action that was widely advised by the Government of the day--to ensure her better health in later years. In the following months, her parents noticed that she did not respond to sound and noise, and they duly notified their doctor, who referred Lorayne for various tests. After the tests were completed she was diagnosed, at the age of 14 months, as profoundly deaf.

Lorayne's parents were loving and caring, and they did their best in very difficult circumstances. However, at the age of eight or nine she developed epilepsy, and her family were subsequently informed that that was a result of the injection. According to NHS statistics, the chances of that happening were three in a million. From that age onwards, Lorayne was reliant on anti-convulsant drugs, which were used on many occasions over the years. Nevertheless, she had fits every day of her life.

Some of the drugs caused serious side effects such as swollen joints and hyperactivity, which are common among youngsters who suffer from epilepsy. By the mid-1990s, Lorayne was being prescribed Epilim, Rivotril and Frisium, which limited her fits to about three or four a day. As her parents pointed out, thanks to the excellent attention of NHS staff she had some semblance of life, even though she needed attendance 24 hours a day. Of course, she could not go out alone or do anything unattended. She had to be taken to the toilet, washed and given her medication, and was unable to do any kind of work. For example, she could not go anywhere near a kitchen in case she had an epileptic spasm near a hot kettle or oven.

I have outlined the background to give some idea of Lorayne's condition and the reasons why she needed, and received, constant attention. Like most caring parents with a sick child, Lorayne's mother and father were open to advice from professionals. At an early stage, they took the advice of NHS professionals and bought a book entitled "A Consumer's Guide to Prescription Medicines". They followed its advice meticulously, and it enabled them to be aware of any side effects of any drug prescribed for Lorayne. It proved invaluable, in that on many occasions it enabled them to inform Lorayne's doctor of such side effects. Indeed, all the consultants to whom I have spoken continue openly and actively to encourage parents to obtain the book.

However, having a child with many day-to-day health and other problems carries a cost. As we all know, in many cases respite care is needed not just for patients but for their carers. In February 1997, while Mr. and Mrs. Buckley were on holiday taking a break, Lorayne

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attended the respite care centre in Lyndsey close in my constituency. Lorayne had an epileptic spasm during her short stay, which caused her to suffer an accidental fall. She was taken to King's Mill hospital in Mansfield where she received stitches to a head wound. Unfortunately, while she was in hospital, staff did not examine her notes properly. She was given inappropriate drugs, which resulted in her medication going haywire, and she became dramatically over-drugged. King's Mill hospital later admitted that there had been a communication breakdown and duly apologised. The family accepted that the situation was the result of a genuine mistake.

Lorayne was introduced to three new sedatives during her stay at the hospital in 1997. However, she was already taking three anti-convulsant drugs, all of which came with strict warnings that caution would be needed if they were taken with other sedatives; the sedatives came with warnings that caution would be needed if they were taken with anti-convulsant drugs. Lorayne was taking three anti-convulsant drugs and three sedatives--a dangerous scenario. The situation alerted her parents to the problems that would occur if she were prescribed the same or similar combinations of drugs. It took months to wean Lorayne from those drugs, during which time she became severely destabilised.

Dr. Mukherjee was in charge of Lorayne's care during that period. As her condition worsened, Dr. Mukherjee continued the combination of drugs, despite several weeks of protest from her parents. When hospital staff informed Dr. Mukherjee that Lorayne's condition deteriorated when she took her medicine, Dr. Mukherjee said that that was "not clinically proven". When Lorayne's parents asked Dr. Mukherjee to explain that terminology, she said proof that the treatment caused the effects was unavailable. They found that exasperating. The extra drugs were taken away from Lorayne when she transferred back to the respite care centre in Lyndsey close, which caused her condition to improve dramatically.

Obviously, Lorayne's family did not want Dr. Mukherjee involved with her care, because it had taken months to wean her from the wrong drugs. That the drugs were wrong was proved on 21 July 1999 when, following consultation between Dr. Sands and Dr. Houghton of the King's Mill centre--both of whom were previous consultants to Lorayne--and her parents, it was decided to return to the medication that Lorayne had been receiving before she was admitted to hospital. At a further meeting on 4 August 1999, Dr. Houghton and Lorayne's parents agreed to a 28-day trial period on new medication, on the understanding that if her condition worsened they were to contact him immediately.

Lorayne's condition had deteriorated rapidly by 23 August 1999. She was having up to 10 fits at a time and her parents had to administer a suppository of up to 10 mg of diazepam twice nightly. They therefore went, as advised, to see the nurse, who had access to the consultant. Unfortunately, Dr. Houghton was on holiday, and because of the family's previous experiences they refused to see Dr. Mukherjee, who they were informed was the duty doctor. They opted instead to see Dr. Narayana, who said that he would be available on 24 August.

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My inquiries have revealed that Dr. Mukherjee was not the doctor on call when Mr. and Mrs. Buckley went for help on 23 August. Dr. Narayana was on call, but unfortunately he had to attend a funeral that afternoon. Nevertheless, he agreed to make himself available on the following morning. However, because of the scale of the problems, Lorayne's parents, while agreeing to the consultation on the following day, suggested to the nurse on duty that Lorayne needed a small amount of the drug Frisium to calm her down, plus more Epilim to control her fits. Both those drugs were known to help her condition.

On the morning of 24 August 1999, the nurse on duty telephoned to say that although Dr. Narayana agreed with what Mr. and Mrs. Buckley had suggested, he refused to alter another doctor's medication prescription. Bewildered, confused and angry, Mr. and Mrs. Buckley told the nurse that they were going to give Lorayne more Frisium, as she was still below her 1996 levels. After consultation, the nurse informed them by telephone that Dr. Narayana agreed with that, but he again refused to authorise it. One has to ask oneself what kind of an answer that was to give to two extremely distressed parents. He asked them instead to await Dr. Houghton's return seven days later. Amazingly, although Lorayne's fits had increased, he did not consider the situation to be an emergency.

What makes Dr. Narayana's decision especially strange is the fact that he was personally familiar with Lorayne's condition, having been one of her consultants over the years. Her case was well known to him. Indeed, such was Mr. and Mrs. Buckley's status that he agreed that, whenever Lorayne's condition worsened, they should immediately telephone his nurse or secretary for advice on any new medication or actions to aid her. In view of Lorayne's condition, it was standard practice for her parents to bypass their own GP and contact Dr. Narayana's nurse directly--which they had done on many previous occasions.

Sadly, by 5 am on Sunday 29 August 1999, Lorayne was having so many spasms that her parents rushed her to the King's Mill centre, where she was given an injection by a doctor on duty to stop her fits. Her dosage of Epilim was increased to 500 mg a day, which was later confirmed by the hospital as exactly what should have been done in the circumstances. On this occasion, the admitting doctor on duty at the King's Mill centre said that the extra Epilim would take five days to build up in her system and, as she was stabilising, he discharged her on Sunday 29 August.

Unfortunately, on the morning of Tuesday 31 August, Lorayne started to have more fits, and she was readmitted to the King's Mill centre. On Wednesday 1 September, her spasms had built up to one every two minutes, and the doctor on duty at the King's Mill centre said that he did not know what on earth to do. He sought advice from the Queen's medical centre in Nottingham, which is the largest teaching hospital in the county, and was told to administer a drug called Phenytoin--which was experimental in terms of dealing with epilepsy and was known to have major side effects--in three separate doses, at three to four hour intervals. That medication was administered at 3 pm

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and 9 pm on 1 September and at 3 am on 2 September by a junior doctor, as both the centre's senior doctors were still away on holiday.

What followed was devastating. Lorayne developed a red skin. At first, her parents were told that the symptom would disappear, and she was discharged on Friday 3 September. They were instructed to continue to administer 300 mg of Phenytoin per day to their daughter. By Saturday 4 September, Lorayne's skin was so red and irritated that the couple called out the emergency doctor. They were then told to reduce the phenytoin to 100 mg a day, which they did. On Sunday 5 September, they had to call the emergency doctor again, who immediately admitted Lorayne to the King's Mill centre. Her skin had started to blister, and she was given paracetamol as a painkiller.

It is amazing, given the circumstances, that it took two days for a dermatologist to come to examine Lorayne. On 7 September 1999, he transferred her to the intensive care burns unit at Nottingham city hospital. She was immediately given the maximum dose of morphine, which was continued until she died on Saturday 11 September 1999.

By the time of her death, all Lorayne Buckley's vital internal organs had collapsed. She had 11 machines attached to her body to keep her alive. One was to keep her heart beating and another to keep her lungs working. One machine kept up her blood pressure and another replaced her immune system. Worse still--if that were possible--the Phenytoin therapy had caused her skin to blister and fall off her body. She had 100 per cent. infected burns.

Lorayne's parents and the junior doctor involved had been advised only that Phenytoin might cause some adverse reactions. The truth is somewhat different, and can be found in medical records. I have established that Phenytoin can decrease co-ordination. It can cause mental confusion, transient nervousness, motor twitchings, headaches, nausea, vomiting and liver damage. All such effects are worrying factors where epilepsy is concerned. It can also cause dermatological manifestations, including fatal rashes such as bullous exfoliative, or purpuric dermatitis, erythematosus, Stevens-Johnson syndrome and toxic epidermal necrolysis.

Hemopoietic complications, some fatal, have also been reported as associated with the use of Phenytoin. Explicit warnings have been attached to the use of the drug for particular patients, such as those who are on other medications. Those include diazepam, which, as her records clearly stated, Lorayne had been prescribed for many years. A specific warning is also given to substitute alternative therapy in the event of an allergic reaction. That did not happen in Lorayne's case. Phenytoin continued to be administered until its effects were irreversible. Her skin moved from a state of blushing to a state of intensive burns.

Lorayne Buckley died without any skin on her body--it had either fallen off, or had had to be cut off in strips by hospital staff. She could not be given antibiotics, only morphine to ease her horrendous pain. Lorayne knew no language to describe that pain because she was profoundly deaf. She could only be comforted by her loving parents, who held her hand through the

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torturous time until, at 11 am on 22 September, the decision was taken to stop the machines that had been keeping her alive, and she died.

At the inquest, the questions raised by the coroner included what treatment Lorayne should have received in the latter period of her life. The answers given only raise further questions about her sad demise.

I want to ask the Minister a number of questions about this very serious case. Why did Dr. Mukherjee insist that Lorayne's drug regime be changed in the first place? Why did Dr. Houghton ask for a further 28-day trial period? Why did Dr. Narayana refuse to alter Lorayne's medical treatment when he was aware of the problems and the analysis of her drug needs? Why did the consultant at Queen's medical centre prescribe Phenytoin, and did he or she fully explain its dangers to the junior doctor on duty at King's Mill centre that day? Why did the treatment not cease when the first rash appeared on Lorayne's skin while she was in hospital? Why was she discharged while under the therapy and with a rash on her body? Why was Phenytoin continued after her discharge and why did a dermatologist not examine her for two days, by which time her burns were so severe that she had to be rushed to an intensive care burns unit? Why has a public or independent inquiry into the case not been granted, particularly following the coroner's report? Last, but not least, why are drugs such as Phenytoin still being prescribed for epileptics by consultants employed by the national health service?

Amazingly, Lorayne's parents hold no anger against the national health service, which they believe helped her throughout her difficult and tormented life. They still talk proudly of the hospital staff who regularly cared for their daughter for many years, particularly those in the national health service King's Mill centre. However, the crux of the matter is that when they applied for an independent review of what happened to their daughter, they were refused. When I raised the matter with the local health authority and the ombudsman, I received a polite refusal. They even refused to listen to the coroner's tapes of the inquest. I have raised the case with the local hospital, which has been helpful, but still there has been no investigation.

My constituents--Lorayne's parents--are elderly and not interested in vengeance or financial compensation. They have told me that either of those, particularly financial compensation, would be an insult to their daughter's memory. They simply want justice, openness and honesty. They want to know how and why the mistakes were made, and to warn others about the dangers connected with drugs, particularly Phenytoin. That is the least we should give them, and I beg the Minister, in the spirit of openness that the Government are so proud to espouse, to use her office to achieve that, by ordering an inquiry as soon as possible.

12.52

The Minister for Public Health (Yvette Cooper): I congratulate my hon. Friend the Member for Mansfield (Mr. Meale) on obtaining a debate on this important matter. I know that he has taken a personal interest in Lorayne Buckley's case and is anxious that lessons should be learned from her tragic death, which he described so poignantly.

Lorayne Buckley had experienced physical and mental health problems, including epilepsy, throughout her childhood. Neurological conditions such as epilepsy

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are life-long and their impact often extends far beyond the individual concerned to family members. I know that Lorayne's parents devoted their lives to caring for her and their devotion enabled Lorayne to live at home, apart from short spells of respite care. I know that the Chamber recognises her parents' commitment and the selfless way in which they strived to meet her complex needs.

My hon. Friend raised a series of points about Lorayne's care at different stages of her life, and I shall respond to some of those in turn. First, concerning the treatment and care that Lorayne was given during the months before 31 August 1999, I know that Mr. Buckley has made a formal complaint to the trust, and that it followed the NHS complaints procedures. I want to examine how many of the points made by my hon. Friend were considered under the complaints procedure, and I will write to him with a detailed response on the points that were not considered.

I know that some of those issues were referred to the health service ombudsman. As he will know, the ombudsman is independent of the NHS and of Ministers. It is his job to decide whether and when to investigate particular cases. I understand that he has considered the particular issues that were raised by Mr. Buckley, taken independent clinical advice and decided that no further action is needed. Clearly, that is a matter for the ombudsman, but I will look into precisely which issues were taken up with him, and into those to which further response is needed.

Other issues were raised concerning the immediate and urgent medical intervention that took place once Lorayne's condition deteriorated. As I understand it, those issues were not considered by the NHS ombudsman or through the NHS complaints procedure, and it is true that some questions need to be answered. On 31 August 1999, Lorayne was admitted to the King's Mill centre in Sutton in Ashfield so that her condition could be stabilised, and she was given Phenytoin. Phenytoin is a commonly prescribed anti-convulsant that has been used since the early 1960s to treat most types of seizure disorders, and it is widely used in the treatment of grand mal epilepsy and partial seizures. Lorayne was discharged on 3 September, but was readmitted two days later with a rash and oedema to her whole body. Her condition deteriorated, and as my hon. Friend said, she was transferred to the burns unit.

Mr. Meale : I am grateful to the Minister, particularly for her willingness to re-examine all the matters that I raised in my speech. However, I am worried by what I have found out about this drug through the internet. Many senior medical consultants still do not know its effects. A new drug was given to someone who was clearly listed as in receipt of a range of other drugs, even though all medical evidence, including that on the internet, makes it clear that those drugs should not be mixed. One possible immediate effect is a rash, which can easily be fatal. Although I am grateful to the Minister for what she has done, I am worried that the same might happen to other patients, and I ask her to examine the matter urgently.

Yvette Cooper : Phenytoin is not a new drug--it has been in common use for about 40 years. My hon. Friend

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will know that on issues such as this we take the advice of the Medicines Control Agency, which informed me that serious skin reactions to Phenytoin result in hospitalisation in less than one in 100,000 cases. Phenytoin is used to treat epilepsy, which itself can be a life-threatening condition. Other treatments for epilepsy also have rare but serious side effects.

I understand my hon. Friend's point about whether Phenytoin should have been used in this particular case, and I accept that questions arise in that regard. The advice that was given to the parents on what reactions to look out for, and the point at which serious reactions should have been spotted and addressed are matters that need to be dealt with. They go beyond the broader question of the use of Phenytoin, which has been in use for many years. However, I accept that the matter should be investigated by the King's Mill centre.

The normal NHS complaints procedure is time-limited, and this complaint would normally be out of time. However, if Mr. Buckley and his family wish, I shall ask the trust to investigate the use of that drug in that case, and the treatment and care that Lorayne was given at Kings Mill during those critical hours. It is important that those issues are addressed and resolved, for the families concerned.

Mr. Meale : I thank the Minister for her response.

Yvette Cooper : And I thank my hon. Friend. I hope that that the investigation will go some way to resolving the understandable concerns of families who have lost a child in such devastating circumstances.


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