Press Release : Dr Holton Concerns

08/07/2002

Considerable concerns were aired at a meeting yesterday between the University Hospitals of Leicester NHS Trust and the parents and carers of children who were allegedly mis-diagnosed with epilepsy by suspended paediatric consultant Dr Andrew Holton. During sometimes heated questioning, the parents of children affected by Dr Holton's practices complained that:
Children are suffering delays of up to 20 months for routine tests under the NHS;

• Priority was being given to private patients undergoing tests such EEG's which were performed in the same hospital and by the same staff as were saying they were too busy to carry out tests on mis-diagnosed NHS patients;
• The report of independent specialists on the cases of children whose treatment had, on the Trust's review of cases, given "cause for concern" had not been sent to parents who had asked to see their children's notes;
• Parents whose children needed referral or follow up following a change in diagnosis or treatment were being expected to chase up appointments themselves;
• There was a lack of liaison with other services such as education, speech

therapy, psychology and community paediatrics;

Further criticism was levelled at the conduct of The Trent Regional Office for the Department of Health who are conducting a review of the systems that allowed Dr Holton's practice to go unnoticed for so long. Under the guidance of Professor Lindsey Davies part of the remit is to consult with the parents and carers in order to get to the bottom of how this situation was allowed to happen, however they declined to attend the meeting.

Lindsay Wise, Partner at Alexander Harris remarked, "It is disappointing that the Trent Regional Office for the Department of Health declined such an ideal opportunity to meet with a large number of the parents and carers. Unfortunately this decision has led to further dismay on behalf of the families and adds to their disbelief about the way in which this whole situation has been handled by the Authorities involved."
Adrian Stevenson the Chair of the Leicester Epilepsy Concern Parents and Carers Group (LECPCG) steering committee said following the meeting: "I am delighted that the Trust has at last managed to meet the parents affected by this crisis. However, it is clear that parents are facing lengthy waits and cancelled appointments and we are now told that in some cases the earliest appointments for our children to be seen are in 2003. In addition many children need to undergo tests to determine the effects that the drugs which Holton prescribed have had on them. Many families have had to wait for 4-5 months for an appointment and one family have had to wait for 50weeks. In another case after a 12 month wait a mother was told her child had to wait a further 8 months. What has incensed many of those concerned is that whilst we were told that resources were not an issue, we have learned that if you pay privately for these tests to be taken then you can be seen within days or weeks. To add insult to injury these private tests are done at Leicester using Trust equipment and Trust staff".
The parents and carers feel that they have had a general lack of support from the Trust particularly for those where the child has been diagnosed as not having epilepsy. One parent remarked: "We have received no support in terms of guidance as to how to wean our child off of the drugs, no counselling on how to deal with the after effects and no follow-up has been offered to assist us with these on-going problems."
Richard Follis Partner at Alexander Harris Solicitors West Midlands said: "Our investigations so far have uncovered a lot of concerns with regard to the treatment being afforded by Dr Holton. Some of these cases are of the utmost seriousness. Sadly we are also investigating a small number of cases where it is alleged that the treatment given by Dr Holton could have contributed to the death of some children."
"We have heard from a lot of distressed parents and one of our concerns is that the needs of those parents and carers with an ethnic minority background are not being met. The Trust has in our opinion failed in their communications with this large group of people. It is a difficult time for all concerned and it is vital that each and every person is communicated with fully. The steps that need to be taken can be complex and dangerous for the children concerned particularly where they are needed to be weaned off of the drugs prescribed. It is therefore vital that they have information in a format that is of most use to them. We have implored the Trust to reconsider their communications policy to those whose first language is not English."
Editorial Notes:
1. The meeting took place at the Grand Hotel in Leicester on 7^th July 2002.
2. Alexander Harris Solicitors are the official legal advisors to the LEPCG.and represent a large number of parents and carers who believe that Dr Holton has misdiagnosed their children as epileptic.
3. Alexander Harris have lodged statements with the GMC on behalf of a number of clients.
4. Clinical negligence cases are ongoing and public funding has been granted in a large number of cases.
5. The Trust have recently completed their investigation into Dr Holton's attitude and behaviour. The Trust are also carrying out an independent performance review which is scheduled to be completed this summer.
For further information please contact Richard Follis of Alexander Harris 0121 711 5111 or 07814 730250. Alternatively please contact Emma Smith at Alexander Harris Solicitors, Ashley House, Ashley Road, Altrincham, Cheshire WA14 2DW. 0161 925 5555.

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