Annex E – Professional advice obtained

Psychiatric Adviser

The assessment of Mr J’s capacity to consent to care and treatment

1. The Mental Capacity Act 2005 (MCA) was not fully implemented until after Mr J’s death. At that time no other person could consent for someone who did not have the capacity to consent to treatment.
2. DH guidance issued in 2001 introduced a consent form for adults who lack capacity to consent to a particular treatment (Annex B, paragraph 31). It stated:

   ‘…As no-one else can give consent on behalf of such a patient, they may only be treated if that treatment is believed to be in their “best interest”. This form requires health professionals to document both how they have come to the conclusion that the patient lacks the capacity to make this particular healthcare decision, and why the proposed treatment would be in the patient’s best interests. It also allows the involvement of those close to the patient in making this healthcare decision to be documented.’

3. In 2005 clinical assessment had not required documented formal assessment of capacity, and clinical practice varied. However, good practice in 2005 would have required the clinicians involved to consider and document whether Mr J had understood what was being proposed and that he was willing, albeit reluctantly, to comply with the recommended admission. Consideration should also have been given to whether he retained capacity during his admission to give his consent to remain in hospital, particularly as Mr J’s condition was apparently deteriorating. The assessment of capacity was clearly not a static process.
4. A report of the outpatient assessment with Dr A in November 2005, at which his proposed admission was discussed with Mr J and his wife, acknowledged their reluctance but confirmed their acquiescence after a lengthy discussion. I assume that Dr A had decided that Mr J did have capacity at that point but she did not document this. Later in his admission it is clear that someone had decided that Mr J did not have capacity: part of the CPA process at Northgate Hospital included a requirement to document the service user’s agreement to sharing information with professionals. This was incompletely filled out in the clinical notes and in all cases simply said he could not give his consent, clearly, therefore, the guidance in paragraph 2 above was not followed in this case. I consider that the NHS Trust were in error in not documenting the steps taken to assess Mr J’s capacity and to explain what measures they had taken to ensure his best interest, including consulting his family and carers.
5. Although I have seen that Mr J’s wife, as his next of kin, was consulted about his admission, I consider that it would have been good practice to consult his wider family urgently at this point, particularly given that Mr J’s wife had a learning disability herself and therefore may not have fully understood what was being proposed.

The standard of care and treatment provided to Mr J

6. I consider that generally the overall level of treatment Mr J received from the NHS Trust did not fall below acceptable standards.
7. The following examples show how thorough Trust staff were in trying to meet Mr J’s healthcare needs.
   • Early in September the deputy support team manager from Coquet requested a multidisciplinary assessment by the CLDT. Mr J was put on a waiting list on 15 September. A report jointly signed by occupational therapist (OT), psychology, speech and language therapist (SALT) and Physiotherapy was finalised in late October. This report concluded that Mr J was showing signs of cognitive decline and that his care package needed to be revised in the light of his increasing needs.
   • In addition Mr J was assessed by professionals from four disciplines and a community nurse and a consultant psychiatrist also assessed Mr J before admission. There was considerable concern about his safety because of reported falls at home, and because of concerns about the stress his condition was causing in his relationship with his wife. To carry out the investigations needed to properly assess him on an outpatient basis would have been difficult. In addition, social services would have had to provide an immediate and substantial increase in his care package and urgent rehousing. In my opinion, an admission for assessment does seem to have been the only possible decision in the circumstances.
8. However:
   • With respect to medical involvement in Mr J’s care, a neurology assessment in 2003 was inconclusive with respect to epilepsy, but an epilepsy liaison nurse was appointed to work with Mr J and his carers. There was no medical or psychiatric involvement other than by his GP following this until September 2005 when his GP referred him to a consultant psychiatrist – although in 2004 the psychologist had also recommended that a consultant psychiatrist at Northgate Hospital should assess Mr J. There is no record of this having taken place.
   • It is good practice to send copies of letters to the patient and, with their permission, to carers and family members. Such letters clearly have to be written in a straightforward way and someone needs to be alerted to the need to read the letter to a patient who cannot read.
   • One note by the community nurse is an undated summary of a health check, completed possibly in October 2005. The purpose of this assessment was not clear. It does not seem to meet the expected standards of a health action plan to which Mr J was entitled (Annex B, paragraph 26). Mr J would have been able to invite his family to be involved in developing his Plan if he had wanted to. This would have kept them informed about his ongoing health needs. Given the concern about his deteriorating health, I am surprised that such a meeting does not appear to have been set up. Mr K complained that he did not know that the community nurse was seeing Mr J regularly (although the nurse would have had to ask Mr J’s permission before contacting his family).
   • The CPA meeting records were incomplete, often undated and unsigned. The earlier meetings were poorly attended and did not cover the range of needs required by the DH guidance on the CPA. The ‘service user/carer views’ section was not completed.
   • Serious problems began to arise when discharge was delayed because of a lack of suitable alternative accommodation after it had been clearly established that Mr J’s own home was no longer suitable for him. This delay was unacceptable.

   Assumptions about Mr J’s symptoms because he had Down’s syndrome

9. I am of the view that appropriate consideration was given to other possible causes of Mr J’s condition. In coming to this view I have seen that:
   • Investigations identified that Mr J was hypothyroid and this was treated.
   • It was also considered that he suffered from postural hypotension (low blood pressure), which would have contributed to his falls. Advice on the management of this condition was provided in his notes.
   • Mr J had an eye test, although it is recorded that he did not like to wear glasses.
   • Although Mr J was only in his early fifties, it is well known that people with Down’s syndrome age prematurely and the expertise of geriatricians can sometimes be helpful – this was considered by his GP, who concluded that it was not appropriate.
   • There is enough evidence from the medical notes that Mr J did have dementia, which is a very distressing condition for everyone who cares about an individual as well as for the person himself. He had deteriorated considerably by the time of his final admission in April 2007 when the consultant physician noted that he was doubly incontinent.

Whether Mr J’s communication difficulties (including his large tongue) and his usual behavior were properly taken into account

10. Northgate is a specialist learning disability hospital and all of the staff would have been used to working with and communicating with people with Down’s syndrome and learning disabilities. All of the other patients would have had learning disabilities. There is nothing in the papers that I have seen suggesting that his condition was not taken fully into account.

The decision to put Mr J on a soft diet at the time of his admission

11. This is a precaution taken because of the increased risk of choking in people with Down’s syndrome, particularly when starting psychotropic medication. It seems a reasonable decision during a period of assessment and whilst he was commencing new medication. The risk of aspiration pneumonia would have been a concern, and I note that Mr J may have had a chest infection in 2006 attributable to aspiration, and his death was attributed to aspiration pneumonia. Often aspiration is silent and not identifiable by the patient or his carers. I could find no evidence of episodes of choking, but there is evidence that the care staff had received training and support from both the SALT and the dietician about this potential risk as well as to address their concern about his loss of weight.

Request for a second opinion regarding the SALT assessment

12. Best practice usually involves seeking a second opinion when it is requested. I found a record of a senior SALT being asked by Mr K by telephone in December 2005 to review the recommendations of her colleague. This manager did review Mr J’s care and concluded that the SALT’s advice and care plan was correct. The later decision not to seek another opinion was because Dr B considered it clinically unnecessary. Whilst another (third) opinion could have been sought, given the concerns of the family, the treatment Mr J received sounds at least standard if not above average. I was pleased to see that a SALT had been consulted and had assessed the risk of dysphagia and continued to be involved in monitoring his care and training his carers until the time of his death. People with Down’s syndrome are at increased risk of swallowing difficulties and this risk is increased when drug treatment for depression and sometimes for epilepsy is introduced. Swallowing difficulties are also associated with dementia in some people.

The side effects of the medication that Mr J was prescribed on admission – effects on his skills and abilities, including mobility

13. Nausea, headache, tiredness and dizziness, insomnia, constipation and loss of appetite are some of the side effects described for Escitalopram (an antidepressant). Less common effects have been reported on blood pressure. Mr J was started on a low dose of 5mg, which is good practice in someone with Down’s syndrome, rising to 10mg after a few days – the normal recommended starting dose is 10mg. This medication was discontinued after a short period, and the reason given was that he was not showing signs of depression. I note that there was also increasing evidence that the primary diagnosis was dementia. The EEG and the CAT scan, supported by the psychological and speech therapy assessments, confirmed this.
14. Side effects of sodium valproate (an antiepileptic drug) include a decreased appetite, weakness, drowsiness, skin reactions and, rarely, blood production disorders. Mr J’s starting dose was 300mg, which is unremarkable; this was increased to 400mg and later reduced to 200mg. I could see no explanation for the changes in dose but I presume that they were related to his symptoms. I note that it was reported that Mr J appeared more alert after this medication was reduced. In October 2006 this medication was discontinued because of anaemia and replaced with topiramate. It seems that the medication was being monitored but the records I have seen do not provide enough information about the thinking involved in the changes to his medication.

The provision of appropriate activities during Mr J’s stay in hospital

15. It is not usual for someone to have similar activities to their usual programme during a hospital admission of a few weeks for assessment. Mr J was offered art and drama therapy and his care plan included working on his personal hygiene, social training and recreation. In my view, once he was considered ready for discharge his programme of activities might have included more community visits with his wife, thus preparing him for his return home. I consider that his delayed discharge was very unfortunate and the eight hours of support being provided by social services to enable his wife to visit him once or more each week does not seem enough.

Whether the admission was detrimental to long-term psychological and physical health, as it exacerbated the loss of skills and abilities

16. Admission to hospital was clearly a distressing event for Mr J. In my view, this would have been disorienting for him, and discharge to a new home even more so. I think that the staff who took the decision to admit him were aware of the importance of this decision and it was based on their opinion that he was at serious risk of injury or death if he stayed at home without significant changes to his accommodation and support. In this situation either a decision to admit or one not to admit could have contributed to deterioration in his physical and mental health. It is important to recognise that Mr J was suffering from a life-limiting and deteriorating condition. It is difficult to separate the impact of the admission on his psychological and physical health and the natural course of his dementia. However, given the situation, I am of the view that it was not possible to have avoided admission to hospital in Mr J’s case. In coming to this view I have taken the following into account.
17. The only viable alternatives would have been to have immediately provided 24-hour care for Mr J at home whilst seeking to provide ground floor accommodation for him and his wife, and to have provided an intensive home assessment and continuing community treatment by a multidisciplinary mental health team. In reality, co-ordinating such an outcome quickly would have been impossible unless the NHS Trust had such a team already established.
18. That said, if a multi-agency case conference had been held with the extended family and with Mr J and his wife, these options could have been fully explored. It is possible that his family might have offered temporary accommodation for Mr J and his wife whilst new accommodation was being found.
19. Furthermore, Mr J needed urgent medical investigations as mentioned and it would have been difficult to co-ordinate such assessments and assess him fully if he remained at home. A careful reading of the medical records and correspondence clearly indicates that Dr A’s intentions were to admit Mr J for a time-limited period of investigation. He was admitted on 16 November and judged ready to be discharged on 12 January 2006 – just eight weeks later – only two weeks longer than anticipated by Dr A. I consider that this was reasonable.
20. In January 2006 he was assessed at home by a senior occupational therapist and in my opinion her report is detailed and persuasive in its conclusions. It then took a further five months to find and equip suitable accommodation. This was clearly very unsatisfactory, especially given the seriousness of Mr J’s condition. The challenge in such a situation is always to retain the close involvement of social services once a patient has been admitted.
21. I note that Mr K was advised that Mr J should not, on medical grounds, stay with him for a short holiday. In my opinion the explanations for not allowing Mr J to go and stay with Mr K are unsatisfactory, especially if Mr J had expressed a wish to accept his brother’s invitation, or if Mr J was not consulted about this invitation.

Additional comments:

22. In addition: 
    • The record keeping at Northgate Hospital was variable in quality, with some reports (particularly nursing reports) being undated and unsigned. Others were excellent: detailed, informative and well written.
    • It is still unusual for people with learning disabilities to form lasting intimate relationships and to be supported to marry. This suggests that Mr J and his wife had considerable personal coping resources and stable personalities. Mr J’s next of kin was his wife, and staff would have been correct in considering that their primary responsibility was to inform her and seek her opinion. However, she also had a learning disability and her capacity to be involved in decisions about Mr J’s care would also need to have been considered. I am concerned that she was only supported to visit Mr J weekly, which suggests that their relationship as man and wife was not being given full consideration. Also, despite reported concerns about their relationship at the time of his admission, I found only one comment in the hospital records about their relationship – the drama therapist in February 2006 noted that Mr J brightened up in the presence of his wife.
    • Communication seems to have been poor between all of those who had responsibility for Mr J’s care. For someone with complex healthcare needs and a long-term care plan, these communication failures were unacceptable.

Conclusions

23. Overall:
    • It was the responsibility of those caring for Mr J to inform the clinicians about the family background so that they could be involved.
    • The wider family were inadequately consulted. A family meeting, or at least a telephone conversation, should have taken place before his admission. This became a significant factor in later disagreements about Mr J’s care.
    • The NHS Trust were in error in not documenting the steps taken to assess Mr J’s capacity and not explaining what measures they had taken to ensure his best interest, including consulting his family and carers.
    • More effort should have been made to support Mr J spending more time with his wife.
    • Record keeping was incomplete. Best practice would suggest that the NHS Trust should consider routinely copying reports to the service user, their next of kin or another close relative, as agreed with the service user or their advocate.

Nursing Adviser’s comments

24. Regarding Mr K’s specific concern about the care provided to Mr J in the days immediately preceding his death, the Nursing Adviser noted that there were very few entries in the records, but there was no suggestion in those that an imminent, very serious or fatal decline, had been missed or not prevented.