“Dr David Waghorn has offered, therefore, to provide the life saving treatment, on a compassionate basis, to [SAN] using the stem cells (transplantable material) from [SW]. Dr David Waghorn is a qualified medical doctor, but not state-registered, having previously practiced bone marrow transplantation.”
“Neither of the proposed Joint Applicants, Dr David Waghorn and Dr Petrus Jooste, who have clinical responsibility for SW, are registered medical practitioners, having relinquished their membership with the General Medical Council in order to continue their specialized medical practice pursuant toPart VI of the Medical Act 1983 .”
“It shall be lawful notwithstanding the [HTA’s] refusal to consent and the court finding it is in [SW’s] best interests for the Applicants and/or for the doctors having responsibility for SW’s care to carry out a bone marrow transplant procedure and any necessary prior treatment and investigations for SW relative’s condition of [Multiple Myeloma] for such a procedure to be carried out.”
“I am a medical doctor, having relinquished my registration with the General Medical Council in order to continue my specialist medical practise. I have agreed to carry out the proposed medical procedure, with the assistance of a Senior Consultant in Haematology and under the supervision of a Professor of Haematology, which is a World’s first, in type of transplantation.”
“By Consent it is ordered that: 1 If the Applicant delivers up an Allogeneic Bone Marrow Transplantation (Allo SCT) for the primary cure of his brother-in-law, [SAN’s] Multiple Myeloma cancer. 2 That there is nolle prosequi of proceedings of the Applicant by the Respondent pursuant tosection 4(7) of the Cancer Act 1939 .”
“I am a medical doctor, having relinquished my registration with the General Medical Council in order to continue my specialist medical practise. I have known the person to whom the application relates for over 10 years and can certify to the Court that person’s medical condition, as I have done previously.”
“Dr Jooste is a risk to patient safety … The Panel also considers that there is a risk to patient safety in Dr Jooste’s unwillingness to accept or comply with the authority of his regulator, in that he seems not to acknowledge any restriction or control on his practice and will not be called to account. Dr Jooste has behaved in an outrageous manner in his conduct towards the Interim Orders Panel and witnesses and in the entirely unmeritorious applications he has made to the High Court. The Panel has received no evidence of any mitigating factors … The panel has concluded that suspension would be wholly inadequate to mark the seriousness of Dr Jooste’s misconduct or to protect public confidence in the profession. … The Panel has rarely encountered a doctor to whom so many of the indicative criteria for erasure apply. In short, Dr Jooste’s misconduct is fundamentally incompatible with his continued registration as a doctor.”
“… in order for the Court to exercise jurisdiction, in the Court of Protection, there has to be evidence that the patient does not have capacity … The short [point] here is that all the evidence, in fact, points the other way. In fact there is absolutely no evidence that he lacks capacity at all, indeed quite the reverse. My attention has been drawn to the letter dated16th October 2014 from Dr Bray which makes it clear that Dr Hunter, who is the consultant haematologist who is currently treating [SAN], is sure that he has full capacity regarding the decisions concerning his own health, but did not wish to pursue those other treatments. Enquiries both of the insurers, and the legal advice by the medical group confirm that [SAN] has capacity, there is therefore no need for any best interests decision involving his power of attorney. In fact, Dr Bray spoke to [SAN] and he made it very clear that he did not wish for this matter to be pursued at that time and would like things left as they were. That point of view was reiterated by [SAN] himself as recently as Thursday of last week, when enquiries were made on behalf of NHS England. He made it plain that he was currently in remission, that he did not wish for the treatment to be pursued, and that he did not wish there to be court action. Dr Waghorn feels that that very acutely, not least because of his expertise as a doctor, but also I have no doubt because of his concern and affection for his brother-in-law, he is deeply anxious that his brother-in-law simply does not grasp the full effect and indeed understanding of (A) his illness, and (B) what may be done to alleviate or assist him. And that is a point to which Dr Waghorn has repeatedly returned. But, counsel has pointed out, it seems to me correctly that that is for those are dealing with matters or treatment, and it is not for me in arrangement without first being able to establish lack of capacity … It is a short point. As I explained to Dr Waghorn, in order for the Court to deal with the matter I have to have jurisdiction: there is no reason to believe, that he does not have capacity, as the lawyers or doctors understand it. His own treating clinician believes that he has capacity, she having treated him for some time. It is clear, as I understand the evidence, that he has consented to and understands his medical condition and the treatment options, as is plain from the papers. [SAN] himself does not agree that he lacks capacity: he believes that he has capacity to make decisions about his medical treatment and does not, in fact, agree with this application being made. The practitioner who spoke to him as recently as last week also considered, that he also did not lack capacity. Therefore, whilst I understand the position in which Dr Waghorn has found himself, in my judgment I do not think, and indeed I am entirely satisfied that I do not have the jurisdiction to make any decisions in relation to [SAN’s] medical condition and treatment. I have no jurisdiction because there is no evidence that he does not have capacity, even on an interim basis (indeed quite the contrary).”
“… I would like to underline that we do not want to be involved in this case. Anthony Nolan’s position is that allogeneic stem cell transplantation should be provided by registered specialist transplant physicians in an accredited NHS or accredited private transplant centre setting. As such we do not want to be involved in this case in any way. Please do not contact us again about this case.”
“clarify the following: • Is it the position that Dr Waghorn and Dr Jooste do have clinical responsibility for SW or that they do not? … • Is [SAN] aware of this application and why has he not been joined as a party? • Are [SAN’s] medical practitioners (or the Trust where he is receiving care) aware of this application and why have they not been joined as a party?”
“In response to your questions: • You will have to contact Drs Jooste & Waghorn as to their position. • Is your position that [SAN] should be made party to this application? • I do not know the position with regards to [SAN’s] continuing care.”
“I note that your application states that the ‘recipient [of the bone marrow transplant] may have less than 6 months to live’ however in correspondence you have informed me that: ‘I do not know the position with regards to [SAN’s] continuing care’. On this basis I am unclear why you consider this to be an urgent matter and why you have not established [SAN’s] wishes and needs before making this application or at the very least joining him as a party to these proceedings so that he could make his wishes clear to the Court.” • Is it the position that Dr Waghorn and Dr Jooste do have clinical responsibility for SW or that they do not? … • Is [SAN] aware of this application and why has he not been joined as a party? • Are [SAN’s] medical practitioners (or the Trust where he is receiving care) aware of this application and why have they not been joined as a party?” • You will have to contact Drs Jooste & Waghorn as to their position. • Is your position that [SAN] should be made party to this application? • I do not know the position with regards to [SAN’s] continuing care.”
“To summarise the results of [SW’s] Psychometric tests. She had an estimated IQ of 90 – an average IQ. The average IQ for the population is 100 and two thirds of the population have an IQ between 85 and 115. We estimate an IQ score so that when we assess current levels of intellectual function, we can see if there has been a drop in functioning or not. There had been a drop in functioning in [SW’s] case. She had an IQ score of 78 when she was tested in the summer. She was particularly poor on tests of knowledge and reasoning. Her memory scores were also poor when [SW] had to retain and recall verbal and visual information for about 30 minutes or more. She was also poor at organising material in attention. The average score for the population on the tests is 100 and [SW] was scoring between 60 and 70 on these tests.”
“This seems a complicated situation. It seems, from the history provided by [W] and her son … that she had a thalamic stroke but the notes seem to make reference to some diagnostic uncertainty at the time. She presents as having cognitive difficulties and her ACE-III today was 76/100, which is significantly below the cut-off indicative of Dementia. I certainly do not think she presents as someone with Dementia but it gives an indication of the extent of the cognitive difficulties she is reporting. The difficulty is that it is hard to interpret the cognitive data without the neurological content being clearly defined. A thalamic stroke can result in persisting memory problems but equally other non-neurological variables might be important. I think it will be helpful to undertake some more detailed neuropsychological testing to try and get a clearer idea of her difficulties and have said I will arrange this within the next month or so. Finally, the issue has been raised about capacity to consent and participate to Court proceedings. Unfortunately, I think this is a specific assessment that would need to be done by someone with specialist expertise in this area. I think it is going to be helpful to detail her neurology and/or neuropsychological / cognitive difficulties but, even if this process is successful, it will still not provide an answer as to her mental capacity to participate in Court proceedings. Since the Mental Capacity Act, (as I am sure you know!) assessment in mental capacity needs to be as specific as possible and needs to have its own specific assessment. I have explained my assessment could inform this process but have explained to them both today, I think they may eventually need to end up organising a specific assessment of mental capacity which is normally requested and organised by their solicitor.”
“If granted, such a Declaration will enable the public to obtain these life-saving, and curative treatments, from family members – not only for haematological cancers such as leukaemia, lymphoma and myeloma but also for solid tumours, with minimal residual disease, such as metastatic breast, colon & pancreas.”
“(1) Subject to subsections (3) and (5), a person commits an offence if – (a) he removes any transplantable material from the body of a living person intending that the material be used for the purpose of transplantation, and (b) when he removes the material, he knows, or might reasonably be expected to know, that the person from whose body he removes the material is alive. (2) Subject to subsections (3) and (5), a person commits an offence if – (a) he uses for the purpose of transplantation any transplantable material which has come from the body of a living person, and (b) when he does so, he knows, or might reasonably be expected to know, that the transplantable material has come from the body of a living person. (3) The Secretary of State may by regulations provide that subsection (1) or (2) shall not apply in a case where – (a) the Authority is satisfied – (i) that no reward has been or is to be given in contravention of section 32, and (ii) that such other conditions as are specified in the regulations are satisfied, and (b) such other requirements as are specified in the regulations are complied with. … (5) Where under subsection (3) an exception from subsection (1) or (2) is in force, a person does not commit an offence under that subsection if he reasonably believes that the exception applies. (6) A person guilty of an offence under this section is liable on summary conviction – (a) to imprisonment for a term not exceeding 51 weeks, or (b) to a fine not exceeding level 5 on the standard scale, or (c) to both. (7) In this section – “reward” has the same meaning as in section 32; “transplantable material” means material of a description specified by regulations made by the Secretary of State.”
“(1) Subject to paragraphs (2) and (3), for the purposes of section 33 of the Act (restriction on transplants involving a live donor), “transplantable material” means – … (b) bone marrow, and (c) peripheral blood stem cells, where that material is removed from the body of a living person with the intention that it be transplanted into another person. … (3) The material referred to in paragraph (1)(b) and (c) is transplantable material for the purposes of section 33 of the Act only in a case where the person from whose body the material is removed is – (a) an adult who lacks the capacity, or (b) a child who is not competent, to consent to removal of the transplantable material.” to consent to removal of the transplantable material.”
“(1) Section 33(1) and (2) of the Act (offences relating to transplants involving a live donor) shall not apply in any case involving transplantable material from the body of a living person (“the donor”) if the requirements of paragraphs (2) to (6) are met. (2) A registered medical practitioner who has clinical responsibility for the donor must have caused the matter to be referred to the Authority … (3) The Authority must be satisfied that – (a) no reward has been or is to be given in contravention of section 32 of the Act (prohibition of commercial dealings in human material for transplantation), and (b) when the transplantable material is removed – (i) consent for its removal for the purpose of transplantation has been given, or (ii) its removal for that purpose is otherwise lawful. (4) The Authority must take the report referred to in paragraph (6) into account in making its decision under paragraph (3). (5) The Authority shall give notice of its decision under paragraph (3) to – (a) the donor of the transplantable material or any person acting on his behalf, (b) the person to whom it is proposed to transplant the transplantable material (“the recipient”) or any person acting on his behalf, and (c) the registered medical practitioner who caused the matter to be referred to the Authority under paragraph (2). (6) Subject to paragraph (7), one or more qualified persons must have conducted separate interviews with each of the following – (a) the donor, (b) if different from the donor, the person giving consent, and (c) the recipient, and reported to the Authority on the matters specified in paragraphs (8) and (9). (7) Paragraph (6) does not apply in any case where the removal of the transplantable material for the purpose of transplantation is authorised by an order made in any legal proceedings before a court.”
“… Dr Waghorn may not apply for exemption from the Respondent under section [sic] 11(2) because he is not a registered medical practitioner. The Applicant therefore applies for Declaratory Relief from the Court in assertion of Articles 2 and 8 of theHuman Rights Act 1998 .”