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Andrew Selous (South-West Bedfordshire): It gives me great pleasure to rise to present a petition, signed by 2,873 of my constituentsmainly from the towns of Dunstable and Houghton Regis and the surrounding villagesabout the preservation of community pharmacies. Although my constituents do not think that the current system is absolutely perfect, they are certainly severely worried that the proposals in the Office of Fair Trading report would be a retrograde step.
The petition reads as follows:
The Petition of the residents of South-West Bedfordshire
Declares that local communities are best served by local, community-based pharmacies, and that the OFT's recommendations to abolish the "control of entry" regulation would seriously damage local pharmacies.
The Petitioners therefore request that the House of Commons urge the Government to reject the proposals that allow unrestricted opening of pharmacies able to dispense NHS prescriptions, and to preserve local pharmacies and safeguard their continuing provision of services to local communities.
And the Petitioners remain, etc.
Mr. Eric Pickles (Brentwood and Ongar): This is an unusual petition, in so far as it is the product of the work of one man in my constituency, Mr. Probert, who was not involved with any political party. He was so incensed at the size of his council tax bill that he decided to organise a petition among neighbours and acquaintances. To sum up how Mr. Probert feels, I cite a letter that he sent to the Deputy Prime Minister, in which he complains about the victimisation of many ordinary people in the south in order to fund high-spending, generally Labour councils elsewhere. Mr. Probert was struck by the situation for pensioners, who will be particularly hard hit. Some 420 people signed the petition, which represents a considerable proportion of the population for whom Mr. Probert speaks.
The petition reads as follows:
The Petition of the electors within the parliamentary constituency of Brentwood and Ongar, and of nearby district councils
Declares that the local government grant to Essex is unfair and has directly caused an unacceptable increase in our council tax.
The Petitioners therefore request that the House of Commons re-examine the way in which the formula distributes the grant to councils, with the aim of finding a fairer way.
And the Petitioners remain, etc.
Mr. David Heathcoat-Amory (Wells): This petition of 5,000 signatures I present on behalf of the Wells and District hospital support group, which objects to the announced closure of this much-valued hospital. Although a new hospital is planned in a neighbouring town, it will not replace the facilities and bed provision that the city of Wells and the surrounding areas have long enjoyed.
And the Petitioners remain, etc.
Mr. Parmjit Dhanda (Gloucester): I am delighted to present a petition calling for the Government to continue their support for British Energy, a key local employer in my constituency with more than 1,000 employees. The petition has been signed by 3,739 of my constituents. That support has to date included a loan of up to £450 million to the company, a loan not supported by every political party.
And the petitioners remain, etc.
Motion made, and Question proposed, That this House do now adjourn.[Gillian Merron.]
Mr. Andrew Lansley (South Cambridgeshire): I am grateful for the opportunity to raise the important and sensitive issue of retained organs. For all of us, there are occasions when the experiences brought to us by constituents make us deeply sad and concerned and, sometimes, angry. The experiences of my constituents, who have discovered that the organs or tissues taken from their children or other relatives have been retained without their consent or contrary to their express wishes, have been something that I have found it distressing to hear, just as the House learned with shock of the conclusions of the Alder Hey inquiry in January 2001.
It was later in 2001 that a constituent told me of her personal tragedy. She and her husband lost their son in a road accident in 1984. They said that they did not wish any organs to be removed after the coroner's post mortem, so it was 17 years after burying their sonand in the wake of the Alder Hey reportthat they contacted Addenbrooke's hospital, which is in my constituency. Despite the undertaker's assurances at the time, my constituents were suspicious and they learned that organs had been kept after their son's post mortem.
Initially, the hospital told my constituents that their son's appendix had been retained. Later, and after systematic collection of hospital records, they were informed that his thymus had also been retained. Inconsistencies in records and copies of the post mortem reports added to their distress. Their suspicions about examination of their son's brain may never be allayed.
That family, and others in my constituency and neighbouring constituencies around Cambridge, came together in a support group in November 2001. On the occasions when we have met, I have become aware not only of how the discovery of retained organs has caused the relatives to relive all the distress of the original loss and bereavement, but of how it has made things worse. The sense of betrayal by those whom the relatives had trusted and, in many cases, valued for the care of their children or other relations has been deeply painful. The inability to account fully and quickly for retained organs has added to their distress. The relatives were upset that in the wake of the Redfern report on Alder Hey, other hospitals were not immediately ready and able to respond fully and with adequate support to requests from families for information about retained organs.
More recently, I have discussed with another constituent her case, which has been investigated by the inspector of anatomy in the course of his inquiry, prompted by the case of Mr. Cyril Isaacs. As a scientist and doctor herself, my constituent has felt a sense of professional betrayal that her late husband's brain was retained despite her attempts to respect his wishes to be buried intact and her specific wish that organs should not be retained.
I know that the House and the Minister will join me in expressing our deep sympathy with, and regret for, the pain felt by my constituents. What has impressed me
as wellI know that the Minister will agreeis that the families are determined to ensure that the pain that they have experienced should not be repeated in the future for other families. They recognise, as I do, that, with very few exceptionssuch as those revealed by the Alder Hey inquirythe unauthorised retention of organs did not stem from malice or improper motives.In years past, hospital staff often engaged in practices that they believed to be commonplace. Their approach to information and consent was inadequate because the law and practice were inadequate, and because a paternalistic attitude suggested that families would be saved from potentially harrowing details of post-mortem practices and treatment of organs, or from the pain of a delayed burial or cremation while a brain was fixed over several weeks. Moreover, scientific rationality appeared to say to those working in the NHS, "Why should organs relevant to teaching or research not be kept?"
It is now understood and, I hope, agreed that that approach was misguided and wrong. It has given rise to specific instances of abuse, and to a general loss of trust. That loss of trust is serious and potentially damaging if it affects the availability of organs for transplantation, for teaching and research, or for public health surveillance. It would be serious, too, if it were to lead to a loss of morale and motivation in the pathology profession.
It has been recognised on all sides that, in order to offer any redress, it is essential that families learn about retained organs and tissues, that those organs and tissues are dealt with according to the families' wishes, and that the families are given support. In addition, however, it is crucial to put in place a statutory and best-practice framework that establishes and maintains a high standard in dealing with families and retained organs. Such a framework would recover and retain trust between the public, the medical professions and the NHS.
It is four years since the Association of Community Health Councils first raised the issue with the Department of Health. I want to recognise the steps that the Department has taken: the chief medical officer's census, subsequent report and 17 recommendations in January 2001; the publication of draft codes of practice for families and post mortems; the piloting of standardised consent forms; the consultations last year entitled "Human Bodies, Human Choices", and the investigation by the inspector of anatomy to which I referred earlier.
Not the least important element in maintaining the momentum of reform and in establishing a mechanism for families and the public to express their concerns has been the establishment of the Retained Organs Commission. The commission, which has worked to secure disclosure by trusts and the continuing audit of organs and tissues, has held meetings nationwide, including one in Cambridge last July, and has advocated the interests of the public and families.
In this context, it is especially encouraging to note that, last week, the Government published their code of practice for families and post mortems, including standardised consent forms. The Government have recognised that the issues should be differentiated according to whether the consent is related to an adult
or to a child, and whether it is a coroner's post mortem or a hospital post mortem. Also, the publication of a summary of responses to last year's consultation on legislative reform and an interim statement by the Department about the use of human organs and tissues give reassurance that the Department and the NHS will actively seek to meet high standards in dealing with families in connection with the use of organs and tissues.While I welcome the publication of those documents, they are interim in nature and require further definitive action in new legislation. Like recommendation 1 in January 2001, the chief medical officer himself said that
This is the third time that I have questioned Ministersthe first time in an Adjournment debateabout the timing of legislation. The most recent answer that I received from the Leader of the House was that draft legislation would be published in this parliamentary Session. I urge the Minister to go further. Will she commit the Government to publishing a draft Bill before the summer recess? Given the nature of the legislation and the issues that it covers, does she agree that there should be pre-legislative scrutiny? If scrutiny is to be as accessible to public and professional input as we would all wish it to be, and if a Bill is to be enacted in the next Session, I am sure that such a timetable is necessary. I know that the Minister cannot pre-empt the Queen's Speech, but she could tell the House that a draft Bill will be available within three months and that pre-legislative scrutiny will apply to it. As a veteran of the scrutiny that took place on the Communications Bill, I can vouch for the value and effectiveness of such a procedure, not least to the Government themselves.
When will the Minister publish the findings of the inspector of anatomy? The sooner we see the extent and nature of the problems, the sooner we shall be able to resolve the issues leading to new legislation.
Notwithstanding the fact that the key messages for the development of new legislation are helpfully set out in the Government's summary of responses to the "Human Bodies, Human Choices" document, I want to highlight a number of conclusions that ought to be included in the legislation. First, it is vital that the terms "tissues" and "organs" are both used and are clearly distinguished from each other. The past use of "human tissues" as an encompassing term has, I am afraid, failed to make it clear to relatives that whole organs were to be removed or retained. The consent forms published by the Government last week make that distinction, but we need a clear legal basis for whether consent has been given for the removal or retention of whole organs. That is not to imply that the treatment should be different when it comes to requests or requirements for consent or
for decent disposal. However, families may require different things for whole organs or may be less willing to provide consent. We must respect that.Consent should be the basis of the new legislation, and it should be informed consent. It is properly recognised that relatives or family will not wish in some instances to know all the details of a post mortem examination. For the protection of staff involved, as well as to be clear for the family, if families wish to offer consent without receiving full information, such a procedure should be explicitly provided for through the consent form. The next of kin could signify that they had declined to receive full information, but had none the less expressed their wishes.
The definition of "next of kin" is also important. Clearly, the wishes of the deceased person should prevail, if known, and that should apply to all those over 16. If those wishes are not known, we need a clear procedure to determine the next of kin that does not involve hospital staff in making arbitrary decisions or prolonged investigation of family and social relationships. Clearly, the best route would be to encourage patients to nominate a next of kin and to understand the implications of that choice. People should be free to choose, regardless of specific natural relationships. However, I commend the view, given in the response to consultation from Addenbrooke's hospital, that where consensus cannot be reached between those judged to have equal rights to act as next of kin, no steps should be taken with regard to the patient's body or body parts unless a senior cliniciannot the consultant for the deceasedjudges that it is in the best interests of a living patient to use or transfer tissue to prevent serious deterioration or to save a life. The Addenbrooke's submission rightly states that the knowledge that relatives must agree or the matter could be taken out of their hands should ensure that that step is only rarely used. However, if an independent person from outside the hospital is also available to arbitrate or to determine next of kin, the risks and interference with the hospital should be minimised.
The requirement to report back to the family should be applied in the spirit of a donation, so that it should occur if, and only to the extent that, it is requested by the family concerned.
Finally, there is the issue of penalties. The availability of sanctions is an essential aspect of securing compliance and promoting confidence in the light of past events. I wish it were otherwise, but it is not. The penalties, however, should primarily apply to the organisations concerned, in so far as the non-compliance is not the result of malice, improper considerations, personal gain, or gross negligence. In the latter cases, penalties may be applied personally rather than institutionally. Our objective should be to ensure that, where NHS staff act in good faith, they will not be at risk of criminal liability, but that the systematic failure of an institution to meet its obligations to a family will not go without redress.
Those are the key issues that we, as legislators, must address. I am encouraged by the fact that the Government are moving in the right direction and are minded to establish a single regulatory framework, incorporating Her Majesty's inspector of anatomy and the requirements of the Anatomy Act 1984, as well as an amended Human Tissue Act.
In parallel with the preparation of legislation, the continued work of the Retained Organs Commission is needed, but I convey the view of a constituent that the commission's work should give full consideration to the concerns and needs of the families of adults whose organs and tissues have been retained without consent. Deeply distressing as the loss and bereavement of the families of children must be, I am sure that those families would not want the commission to act on their behalf to the exclusion of the interests of the families of adults.
Also in parallel, we need additional support for family networks, such as the Cambridge area support network. Their courage in being prepared to turn their pain into a basis for representations and help for others, geared to preventing suffering for others in the future, is to be commended. They need practical assistance, including financial help, to make their contribution over the difficult months, or perhaps years, ahead.
I must conclude. Families in my constituency who are affected by organ retention, as well as those providing care and medical services, are all clear that reform of the law and regulation is needed. They all understand that we need to carry out that reform in a way that respects the wishes of patients and their families, and which inspires trust because it is clear and understandable, practical, deliverable and enforceable. We all recognise that families would rather have the pain of knowing than to be left in ignorance. They recognise that a wider public good needs to be secured, for research, education, public health surveillance, transplantation and other reasons, but that will only happen in future if the public trust the system sufficiently to donate organs and tissues through informed consent.
We all recognise that the vast majority of practitioners in the national health service and the coroner's system act in good faith, seeking to do what they believe is right and in the interests of their patients. Through reform, we must enable the public and practitioners to re-establish between themselves the sense of trust on the issue that is central to the caring work of the national health service.
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