Annex D – Comments from Dr A and Dr B

Dr A

1. Dr A, who has since retired, told us in her written response that she had provided consultant input at the NHS Trust for adults with learning disabilities from 1999 onwards. She had not had responsibility for the geographical sector in which Mr J lived. However, at the time of Mr J’s admission there had been no consultant psychiatrist in post for Mr J’s area so she had agreed to provide emergency cover. She had been unaware when she had been working at the NHS Trust that there had been a complaint regarding the care and treatment provided to Mr J. Her only recollection was that a manager had briefly asked her why Mr J had been admitted. She said that her comments were therefore based on the limited documentation she had been provided with and her recollection of the events which had taken place several years previously.
2. The NHS Trust had a part-time specialist in old age psychiatry whose remit included patients with Down’s syndrome aged over 40. Urgent referrals within this category would be picked up by a sector consultant and then referred to the specialist concerned. This was standard practice in psychiatry, where care was divided by specialities and geographical sectors, and in any situation where a consultant provided responsible medical officer (RMO – under section 12 of the MHA) cover. It was not usual practice to document such handovers in the medical notes or to obtain specific consent from the patient or relatives for such a handover.
3. Dr A said that she had decided on a rapid assessment because Mr J’s GP had made an urgent referral regarding Mr J’s declining condition. Mr J’s wife had not attended on 11 November 2005, and little background information had been available, although she had been aware that the Coquet Trust provided some support. Dr A said that she had not been informed that Mr J had been regularly reviewed for several years by the Consultant Clinical Psychologist, or that an urgent referral had been made to speech therapy regarding concerns about episodes of choking. Nor had she been aware of the multidisciplinary referral and assessment in October 2005. Her initial impression had been that Mr J had a depressive illness.
4. After she had seen Mr J she had spoken to a nurse from the CLDT, who was also Mr J’s community nurse. The nurse had not been present at the appointment because Dr A had been unaware then of the nurse’s involvement and no one had told the nurse about the referral.
5. The nurse concerned had informed her that recent attempts to assess Mr J had been unsuccessful because Mr J had ‘slowed up’. Dr A said this could be symptomatic of psychomotor retardation or severe depressive illness. Because the information provided about Mr J’s deterioration in functioning indicated a possibility that he was severely depressed, she had started him on half the therapeutic dose of an antidepressant with minimal side effects. This was necessary because Mr J’s carers had given a history that was consistent with myoclonic epilepsy; it was usual practice to start people with learning disabilities on a reduced dose because they may be more susceptible to side effects. The plan was to increase the dose when Mr J was next seen. Dr A added that myoclonic epilepsy could also be a symptom of an Alzheimer’s type dementia in people with Down’s syndrome.
6. Dr A went on to say that she had given the community nurse a prescription and asked her to discuss the medication and any possible side effects with Mr J, his wife and carers and to organise a Medipack (a compliance aid) to simplify administration. She would normally have discussed this with the patient and carers herself, but had been unable to do so on this occasion because Mr J had already left the hospital site. As the community nurse was a senior and experienced nurse and Mr J was well known to her, Dr A did not consider this plan to be inappropriate.
7. The community nurse subsequently asked her to review Mr J urgently a few days later on 16 November 2005. Mr J was said to have deteriorated further; in addition, he had not been eating or drinking (which might also be symptomatic of depressive illness).
8. Dr A said that, although she had been informed that Mr J had lost weight, he had not initially presented as underweight. However, on 16 November 2005, she noticed that the waist of his trousers seemed too big, suggesting that he had previously been overweight.
9. That day, Mr J had spent over two hours in her clinic. He had been extremely distressed and it had been evident that Mr J’s wife was anxious about his condition and found Mr J’s deterioration hard to cope with. It was clear that there had been a major deterioration in Mr J’s condition since she had last seen him; it was very unlikely that this could have been caused by the sub-therapeutic dose of medication dispensed two days previously.
10. Dr A said that it was unclear whether Mr J was suffering from a severe and major depressive illness; early symptoms of dementia; the effects of an intracranial lesion, such as a chronic subdural haematoma;1 or whether there were any other unidentified significant factors. Admission for further assessment was therefore required.
11. Dr A said that she had considered contacting Mr K, who lived some 80 miles away, but given the available information, and Mr J’s and his wife’s distress, she had considered it of paramount importance to find Mr J a place of safety. The only beds to which she had access were in Northgate Hospital or another learning disability hospital some distance from Mr J’s home. The chances of obtaining a bed were limited; however, a bed had become available at Northgate late in the afternoon of 16 November 2005; she knew from experience that if she did not take the bed it would probably be reallocated to another emergency during the night.
12. The options available to her that day had been:
    • If Mr J, his wife and carers were in agreement she could have immediately admitted him to hospital for assessment. This option would allow Mr J (and his wife) to be taken first to look around the ward by the community nurse.
    • If Mr J had not been agreeable to admission, assessment under the MHA would have been necessary. This would have been difficult to organise, as she could not have called on other learning disability psychiatrists for a second medical recommendation because they covered a different geographical area. In her experience it would have taken several hours to locate another mental health psychiatrist who would be willing to undertake the assessment. Although it was evening surgery time she did not telephone Mr J’s GP to ask him to attend, because the building in which her clinic was situated closed at 5pm. She did not consider it appropriate or safe for her to stay in the building alone with a very distressed patient and a disturbed relative.
    • She could have sent Mr J home with his wife, who was behaving rather aggressively. However, she had also been aware that Mr J could wander at night (because it was recorded that he had been brought home by the police). It was already dark, and she had been concerned that Mr J might not be at home if she arranged for an approved social worker, the consultant on call and another psychiatrist and/or Mr J’s GP to see him. Additionally, that would have meant that Mr J could have been taken to hospital at night by strangers.
             
13. There had also been the possibility that, as Mr J had agreed to admission, an approved social worker would not have agreed to detaining him under the MHA. It had been unclear at the clinic whether Mr J had capacity to consent to admission. He had been so distraught and mentally slow that any formal assessment had not been possible at the time. When the options had been discussed with him, his wife and carers it seemed that the best one was to view the hospital, meet the staff and see if he was prepared to stay there.
14. Dr A had not been present at the admission. The community nurse had provided Mr J with transport and support. The admitting officer had documented that Mr J ‘was happy to stay’. Dr A considered this was a practical demonstration of Mr J’s capacity to consent to admission after he had seen where he would sleep, who would be looking after him, the physical environment and other patients. Not only did this demonstrate to her that Mr J had had capacity in this matter, but it had also, in her view, been an excellent demonstration of giving patients concrete choices, in contrast to relying on a presumed facility for abstract thought, which could be discriminatory. Dr A said that it was important to remember that the law then, as now, made a presumption of capacity.
15. The assessment of capacity had not been static, but was an ongoing process that was specific to the choice being made. Dr A said that it would have been contrary to her normal practice, or that of nursing staff, to ignore a request to leave or to ‘persuade’ a patient to stay against their demonstrated will.
16. Dr A acknowledged that she could have chosen to assume that Mr J lacked capacity, because he was in such a state of catastrophic distress, and proceeded with assessment under the MHA. However, guidance stated that there should be an assumption that the patient possessed capacity until shown otherwise. She considered that to have compulsorily detained Mr J under the terms of the MHA might have been discriminatory, given that he might have had capacity to make a valid choice when in a safe place and not overwhelmed by distress. To support that view, she noted the contrast between Mr J’s clinical presentation in the late afternoon of 16 November and that on 19 November 2005, when it was recorded that he had enjoyed a TV programme about dancing and had asked a nurse for a dance. She considered that it would have been invalid to have formally assessed Mr J’s capacity on 16 November alone in the circumstances.
17. That said, had Mr J not agreed to admission, there had been, in her view, grounds to detain him under the MHA. These were: safety, given the available history; the significant and rapid deterioration in his mental health; loss of weight; refusal to eat or drink; wandering; history of falls; extreme distress; and his wife’s difficulty in coping with his deterioration.
18. Dr A said that she would usually have documented in her notes that, if Mr J expressed a wish to leave the hospital, he should be assessed under the MHA. She had not done this at the time because of the urgent need to get Mr J to a place of safety, and the medical notes needed to accompany him to the hospital. In an ideal world she would have made additional telephone calls. She could not recall whether she had had Mr K’s contact details. It would not have been possible to arrange for someone to stay with Mr J overnight at his home and reserve a bed for the following morning, because there was no person immediately on hand to provide such care. Social services would have seen this as a medical (as opposed to a social) problem and there was no out-of-hours community care available via the NHS. If care staff had been available, they would not have been able to prevent Mr J wandering. Any scenario other than admission would have resulted in Mr J being further traumatised and/or at risk.
19. The community nurse who had accompanied Mr J to hospital was able to witness whether he was willing to stay; and one of the duties of the admitting officer was to contact the next of kin. Although Mr J’s wife was his next of kin, Dr A had been sure that his wider family would be contacted.
20. Dr A said that her normal practice when admitting a patient in an emergency was to telephone the ward later that evening or early in the morning, before the night staff went off duty, so that she could get a first hand account of the patient’s mental state and any concerns. If she were on duty the next day, she would contact the day staff. In any event, staff were aware that, if they had any concerns, they could contact her. She noted that the documentation she had seen did not indicate that Mr J had expressed a wish to leave, or tried to leave, or that Mr K had requested a discharge. If this had been the case, Mr J would have immediately been assessed under the MHA. Almost certainly, she would have detained him within the terms of the MHA unless suitable alternative arrangements had been made, such as Mr J staying with Mr K, but with 24-hour care and twice daily assessments being available.
21. Moreover, she had arranged for Mr J to be assessed for an intracranial lesion as a possible cause of his symptoms. Arranging a CT examination had taken several hours by telephone. She could not have managed this on an urgent outpatient basis, and arranged transport and escorts, and attended her other patients.
22. Other investigations (blood tests to exclude problems with hydration, vitamin deficiency, thyroid problems, anaemia) had been organised as a matter of course. An urgent EEG had been arranged due to reports of fits; and an urgent dental appointment, regarding difficulties with chewing and swallowing. It would have been difficult to organise these urgently on an outpatient basis. Moreover, it had been essential to have an ongoing assessment of Mr J’s mental state and behaviour via 24-hour observation.
23. The records indicated that there was a marked variation in Mr J’s mood during the course of the day. He had been very unresponsive in the morning, but more alert in the late afternoon. Such symptoms could indicate depressive illness; but where there was also evidence of confusion, it could also give rise to a clinical presentation consistent with dementia – a pseudodementia. She had therefore increased the antidepressant medication to a therapeutic dose. However, after seven days Mr J had become very sleepy and there was evidence of low blood pressure, both possible side effects: she had therefore discontinued the medication for baseline assessments of blood pressure, mental state, and fit frequency.
24. The specialist in the psychiatry of old age had been unable to attend the CPA meeting on
    1 December 2005. Dr A said that she had not asked at that meeting who had known
    the patient best, as Mr K had suggested (paragraph 19 of the report). The meeting had concluded that Mr J’s care would be formally transferred from Dr A to Dr B from that day onwards and that social services would be contacted regarding the urgent need for accommodation and probable 24-hour support. Dr A said that she had explained to Mr K during the meeting why the antidepressant medication had been stopped (as in paragraph 24). Dr A had indicated that she would leave Mr J off all psychotropic medication until he had been seen by Dr B. She also recalled a long discussion with Mr K after the meeting regarding the possibility of early onset, Alzheimer’s type, dementia in someone with Down’s syndrome.
25. Dr A said that she had not diagnosed dementia, nor had she made any other formal or definitive diagnosis, as she handed over care early in the assessment. This would have been made clear at the CPA meeting. Keeping Mr J off medication until baseline assessments could be made, and discussing the possibility of early onset dementia with Mr K, had been good practice.
26. She recalled the community nurse making arrangements for the CLDT to provide transport for Mr J’s wife to visit him; that would be impossible to arrange for all inpatients.
27. Dr A said that she believed that she had provided Mr J with a good standard of care and had made strenuous efforts to ensure that he was not discriminated against; she made every effort to exclude any underlying physical or treatable cause for the deterioration in his condition and mental state. Dr A concluded that formal responsibility for Mr J’s care had passed to Dr B on 1 December 2005, and she had had no further involvement with his care subsequently.

Dr B

28. Dr B said that a letter that she had written on 18 January 2006, to Mr K’s sister, had dealt with the issues raised in his complaint. In her letter she had noted that she had been unable to address questions raised at Mr J’s review on 12 January 2006. She had apologised that the meeting had had to be interrupted. Knowing that Mr J’s family wished to discuss their concerns, she had thought it more appropriate to wait until she met them, rather than gather information over the telephone. She had background information from other professionals and carers. There was evidence that Mr J had developed dementia. Difficulties with chewing and swallowing food were also common, and this risk had been highlighted following a referral to the SALT. The soft diet was to reduce the risk of choking or aspirating food, which could be fatal. It was sometimes difficult to establish whether symptoms were a consequence of depression or dementia. It had been established that Mr J’s symptoms were due to dementia. He had also developed myoclonic epilepsy, which was common in people with Down’s syndrome when they developed dementia. Mr J had experienced side effects from the antidepressant medication initially prescribed, and there had been no clinical reason to restart the medication, given his diagnosis. The multidisciplinary team had Mr J’s best interests in mind, and his needs had been addressed as they emerged.