Annex C – Mr K’s recollections and comments

Taken from Mr K’s correspondence and from notes of a meeting held with Mr K and his wife (Mrs M), his sister (Mrs L) and family on 26 November 2008

Introduction

1. Mr K had initially instigated his complaint with a view to getting Mr J out of hospital and back into his own home, or to other permanent accommodation. Temporary accommodation had clearly been inappropriate, particularly the care home. Due to Mr J’s sad death, this had not been achieved. Clearly, the outcome the family now sought was different. Mr K explained that the family considered that Mr J’s human rights had been ignored, as had their human rights as a family to be included in, and treated fairly in respect of, the decisions that had been made about what was considered best for Mr J. Mr K said that the family had been in almost daily contact with Mr J and had spent a lot of time either visiting him, or having him and his wife to stay with them. Mr J’s carers had been well aware of the extent of the family’s contact; nevertheless, the family had not been consulted prior to Mr J’s admission, or asked to provide information about Mr J which would have been relevant to assessments of his condition. Mr K believed that Mr J had been discriminated against because he had Down’s syndrome. Mr K noted that Mr J had not suffered from any of the usual congenital problems associated with Down’s syndrome and had rarely been ill. He said that he did not believe that Mr J’s sudden decline had been due to early onset dementia, but had resulted from:
   • assumptions made that the symptoms Mr J had been displaying had been caused by dementia, which mean that other possible causes of his decline had not been properly considered. Mr K believed that the symptoms Mr J displayed prior to admission had been caused by depression resulting from his mother’s death and the loss of a friendship. He also believed that during this period, prior to his admission, Mr J had not been provided with sufficient activities and support to maintain his skills and abilities or to provide him with a proper diet.
   • The admission to hospital and the decision to keep him there, although he had not been sectioned under the MHA, which had exacerbated his decline. Mr K pointed out that the side effects of the medication1 Mr J had been prescribed had resulted in his being heavily sedated, and had therefore considerably reduced his alertness and abilities. Mr J had not been provided with sufficient activities to help counter this; for example, he had not been allowed to use stairs or provided with other exercise, and had therefore lost mobility skills. His physical skills had been further reduced by the decision to place him on a soft diet. Mr K said that Mr J had been treated as an invalid and had not been allowed to function to his full capacity, with health and safety reasons often given as an excuse.
   • Mr J being traumatised and distressed by the admission to hospital and being kept there, and by his stay at the care home.
   • The temporary accommodation provided at the care home being unsuitable, which had further exacerbated Mr J’s loss of skills and abilities.
2. Mr K said that social services had failed to question what was happening to Mr J, and healthcare clinicians had not been interested in his character. Mr K believed that, had Mr J received appropriate support and care, he would still be alive. Mr K hoped that the investigation would result in these failings being acknowledged and apologised for, and that those responsible for not providing Mr J with an appropriate service, and for depriving him and his family of their human rights, would be made fully accountable for any identified failings. He also hoped that the investigation would prevent others not having to endure a similar experience.

Mr J prior to admission

3. Mr K gave a detailed description of Mr J’s personality, general condition and skills, including in particular the week before he was admitted. He said that Mr J had been active and outgoing, and had enjoyed excellent health and had not been on medication prior to November 2005. Mr K explained that in many ways Mr J had been highly intelligent, but that due to his condition, there had been limits to his comprehension and ability to understand the implications of what was being said.
4. Mr J had also had a large tongue, which meant that he had had difficulty speaking and communicating orally; consequently people had often assumed that his comprehension was less than it actually was, however he had understood many things. Mr J had had a strong wish to be as independent as possible. The family had supported this, but had still wished to remain in the background as a safety net, given that both Mr J and his wife had learning disabilities. Mr K gave an example of an incident in which he had shadowed Mr J during a shopping activity and had been spotted by Mr J. Mr J had made it clear that he had understood that his brother had been shadowing him and was offended by this. Mr K told us that Mr J would have found it difficult to have conversations with a stranger of the kind it was suggested he had had. The family therefore felt that the notes in the records which said that Mr J had made various statements could not have been an accurate reflection of what had actually been said by him. Mrs L pointed out that over the years Mr J had never been provided with a speech therapist, although he had clearly needed one.
5. Mr K said that Mr J had been polite. If he had felt pressurised, nervous or uncomfortable he would fiddle with his cuffs, cough and indulge in other forms of behaviour which the psychologist had described as ritualistic, or an indication of compulsive behaviour. However, Mr J had always displayed such behaviours since childhood, and they had therefore been an integral part of his personality, and not evidence of a cognitive decline, as the psychologist had suggested. The cognitive functioning tests that Mr J had been subjected to would have caused him considerable distress, and he would not have been able to function normally during these. Mr K pointed out that the records said that on one occasion when the testing had stopped and Mr J had been asked if he would like a cup of tea and a biscuit, it had been noted that he had ‘perked up’ and behaved very differently. Mr K, therefore, questioned the accuracy of the psychologists’ assessments of Mr J when the reports contained statements that were clearly inaccurate, recording Mr J as doing things which he could not do, and describing his usual behaviour as evidence of a cognitive decline. He believed that Mr J had been labelled with dementia.
6. Mr J had been kind, had wished to please people and had been very sociable; when his wife, Mrs N, had been ‘in a mood’, Mr J would be the one who could and would get her out of it. Mrs N had been sensitive to voice intonation and to the way that a question had been phrased, and she would try to give the answer that she thought the questioner wanted to hear. This made asking her about Mr J’s behaviour completely unreliable.
7. Mr J’s personality had been quite different from his wife’s. Mr J needed activities to maintain his skills, and he had been more active and outgoing and had liked to do things such as going to the pub, playing snooker and that he had loved ‘office work’. Mrs L said that she had taught Mr J some reading skills. Mr K said that until 2003 Mr J had had a placement in an office in which he had done the photocopying. He had loved this activity and it had given him great self-esteem. The placement had been for a limited time and when it came to an end it had been extended, but could not be made permanent. Another placement in a canteen at the swimming baths had been found – but Mr J had hated this and had not pursued it. Mr J had not had any proper ‘work’ or skills activity since 2003. Mr K said that he had asked for Mr J to be ‘educated’, so that he could keep his skills and his self-esteem up. Mr J’s mother had died in 1998, and then in 2003 a support worker, with whom Mr J had had a very good relationship and whom he had considered ‘a friend’, had left his post working with Mr J within the Coquet Trust. These events had been a big blow to Mr J and, combined with the loss of his office placement in 2003, and being informed that he would never learn to drive (a cherished ambition), had resulted in him sometimes being depressed. It was this that had caused his difficulties.
8. Mr K said that he had raised with the Coquet Trust his concerns about the amount of support that Mr J had been receiving, both with regard to the activities provided and the amount of day-to-day support that Mr J and his wife were receiving, particularly in relation to the provision of meals. The Coquet Trust had asked him to contact social services directly about this, which he had done. He had asked for more support for Mr J, and eventually this had increased from 15 hours to 21 hours per week. Mr K pointed out that Mr J and his wife could not cook and, in effect, were left for four days each week without support; he thought that this had resulted in them not having adequate nutrition.
9. Mr K said that Mr J had thought the world of his wife, Mrs N, and that being together had been very important to them. Mrs N had been less outgoing and active than Mr J, and this had impacted on Mr J to some extent. Like Mr J, Mrs N had a strong personality and was very clear about what she wanted or liked. She liked new things and had little concept of time. She could be quite vociferous and this could be interpreted as her being more aggressive than she actually was, and of understanding more than she in fact could. Mrs M thought that as time had passed Mrs N had become verbally aggressive on occasion, and had been more difficult to accommodate. However, although she could be quite forthright with Mr J, this had been a normal part of their relationship, and as they had already indicated (paragraph 6 above), Mr J had been good at lifting her mood. The family did not consider that Mrs N had posed any danger or threat to Mr J. Mr K explained that Mr J and Mrs N had often stayed with them. During these occasions they would get Mr J to exercise, to go out and he would eat well. They would do things together as a family.
10. Mr J had stayed with Mr K and Mrs M for a week in October 2005, and had returned to his home nine days before he had been admitted to hospital. Mr K recalled that Mr J had not been in his usual state when he had arrived to pick him up. He had appeared to be gloomy and confused, and had appeared dishevelled. However, he had improved greatly over the week he had stayed with them. Although he had been a fussy eater and had very firm tastes, he had eaten a normal diet (meat and two vegetables, which he liked); he had exercised – gone for walks and so on. His mood had improved considerably and he had returned to his old self, and seemed happy and well. There had been no evidence to suggest that he was unsafe at home.
11. Mr K recalled that, during a telephone conversation prior to the October visit, Mr J’s wife had said that he ‘was alright now’ and when asked what she had meant, had said that Mr J was ‘walking ok now’. There had been some problems with Mr J’s mobility when he arrived that October. He had initially been walking slowly, with his head down, not looking where he was going, but they had addressed this with him and his gait had been back to normal by the time he returned home. There had been no sign of Mr J having any difficulty with eating when he had stayed with them. Further, there had been no indication that there had been anything wrong with him other than not having enough activities, or support with maintaining an adequate diet. Mr K said that he had not seen any indication of a decline in Mr J’s cognitive or other abilities at this time. He had therefore concluded that Mr J had been depressed when he had picked him up, but had returned to his old self when provided with activity and support. Mr K added that when he had returned Mr J to his home in Newcastle Mr J had run up the stairs, sorted his post and then come back down the stairs to wave goodbye.

The admission

12. Mr K said that, prior to Mr J’s admission, there had been no discussion with him or other family members about any concerns that had been expressed about Mr J’s condition and skill level. The family had known that Mr J had seen a community psychologist in 2002 and 2003, but had not known why, and had not been aware that the psychologist had been assessing Mr J over several years. They had not been informed that the district nurse had been involved with Mr J’s case. They said that the NHS Trust appeared to be unaware that Mr J had any family. Accordingly, Mr J’s admission to hospital and the healthcare professional’s concerns about Mr J had come as ‘a bolt from the blue’. The family said that social services had not involved them in any previous assessments or action plans regarding Mr J. They had not been informed about any assessments of Mr J’s capacity to consent, or whether he had been assessed under the MHA.
13. The family had first learnt that Mr J had seen Dr A and had been admitted to Northgate Hospital when a support worker from the Coquet Trust had telephoned them on the evening of the day of his admission.
14. Mr K said that they knew the hospital. Mr J had stayed there many years previously to provide his mother with a period of respite care. It was a gloomy place and Mr J had been unhappy there, so the family had looked after him instead. Mr K said that, if he had known about an impending hospital admission, he would have taken Mr J home with him.
15. Mr K pointed out that Mr J had not had an advocate prior to, or around the time of, his admission. He had asked for an advocate for Mr J in December 2005, but had been informed that there had been none available at that time and he had been advised to contact an organisation called Skills for People. However, they had been unable to provide a proactive advocate for Mr J, and eventually Mr J had been provided with an advocate via an independent mental capacity advocacy pilot scheme which had been in operation at the time. Mr K said that he did not understand the circumstances in which the advocate had been appointed, but he believed it had been a result of his actions. He said that she had not really consulted with them other than by telephoning them to inform them that she was Mr J’s advocate. But, in any event, as he had said, Mr J had not had an advocate at the time of his admission. Mr K said that, in the notes, in the reasons given for Mr J’s admission, it had been recorded that Mr J had been crying, had been pushed into a chair by his wife, and that he had been confused by these circumstances. Nevertheless, Mr K said, he did not accept that Mr J would have been happy to consent to admission.
16. Mr K said that, after being informed of Mr J’s admission, he had telephoned the hospital. He recalled that he had been told not to worry – Mr J had been admitted because of depression and would be in hospital for ‘a couple of weeks’ for observation. Initially, therefore, the family had been unconcerned and had gone up to see him the following Sunday. When they arrived they had been shocked by Mr J’s appearance. He had been standing in a room on his own in a classic Down’s syndrome pose, which was unusual for Mr J. He had appeared to be heavily sedated. Mr K believed this to be a side effect of the antidepressant Mr J had been prescribed. He noted that Mr J had also been prescribed an anti-epileptic drug, and that this had also had a sedative effect. Mr K said that prior to this hospital admission, there had been no indication that Mr J had suffered from epilepsy. He recalled that when he had first visited Mr J in hospital he had noticed some involuntary contractions of the muscles of his right arm, which had been described as myoclonic jerks.2 Mr K told us that he had witnessed Mr J having two or three of these contractions once before, but Mr J had not displayed these signs on the five to six hour excursions on which the family had taken Mr J when they visited him or at any other time when he was with his family.
17. Mr J had said ‘great’ when Mr K first visited him in hospital, because he thought that Mr K had come to take him home. Mr K recalled that a nurse had told them that Mr J had been admitted for observation, but they had been provided with no other information.
18. Mr K had attended a meeting at the hospital on 1 December 2005, together with Mr J and his wife, support workers from the Coquet Trust, a senior nurse and Dr A. No representative from social services had attended. Mr J had slept throughout the meeting (the effect of the antidepressant). Dr A had said that she had not ruled out that Mr J was suffering from depression, and she was going to try another antidepressant, but that there might be something else that was affecting Mr J. The district nurse had appeared to dominate the meeting, but her role or involvement with Mr J had not been clarified. Mr K said that, despite his requests, the length and nature of the district nurse’s involvement with Mr J had never been explained to him.
19. It was at this meeting that the family first heard about the tests and observations that were being carried out to establish Mr J’s condition. Although Mr K recalled that Dr A had told them that Mr J’s antidepressant medication would be changed, and they had been introduced to Dr B, the family had not been told that Dr B would be taking over Mr J’s care, nor had they subsequently been consulted about this. Without any explanation, the treatment for depression had ceased and in December Mr J had been prescribed Epilim3 after he had had a seizure in the bath. Mr K pointed out that extreme drowsiness was also a side effect of this medication. The family had not been informed that Mr J might be considered as a suitable candidate for a memantine4 trial. Mr K said that Mr J had been under observation to identify the effects of the medication he had been prescribed, however, as the family had not been asked about Mr J’s personality, skills and abilities as they knew him, the hospital did not have the necessary information to allow them to make an accurate assessment of the impact of the medication. The meeting had stopped when Mr K had indicated his unhappiness with the way the meeting had been progressing. Mr K acknowledged that he had told the nurse to ‘shut up’. He later told us that at the October 2006 local resolution meeting with the NHS Trust, the NHS Trust had apologised for the nurse’s behaviour at the meeting and had said that she was inexperienced.
20. A further meeting had taken place in January 2006. Mr K said that the family had not previously been informed about who would be at the meeting, and they had entered the room to find that seats had been reserved for them, but that the meeting appeared to have already started. They had been shocked to learn that it seemed that the healthcare professionals had been unaware that Mr J had any family, and that Dr B had started the meeting by asking who knew Mr J best.
21. The family had also been shocked to learn at the meeting that, shortly after admission, Mr J had been put on a soft diet on the advice of the speech and language therapist (SALT). They had also been shocked to learn that he had been allocated a wheelchair, in case he fell. They said that, prior to his admission to hospital, Mr J had been able to walk perfectly well, cope with stairs and eat normally and that he had continued to do all these things after admission when the family had taken him out, but this appeared to have been ignored. The family said that they were convinced that the combination of medication side effects, and the assumptions that had been made about Mr J’s mobility and condition, had together resulted in his being treated in hospital in a way that had seriously damaged his ability to maintain his skill and ability levels.
22. The family had asked for a second SALT opinion relating to Mr J’s diet, but this had been refused; no grounds had been given for this refusal other than that it had not been considered necessary. Mr K said that he had handed in a film which he had taken shortly beforehand of Mr J happily eating crisps without choking which showed that he did not need a soft diet, however this had since been lost. Mr K said that the soft diet Mr J had been given, namely minced fish or chicken leg, would have been particularly unappetising for him, given how fussy he was about his food. Nor did it appear that Mr J had been given much choice, or provided with many opportunities to engage in activities. No risk assessments had been discussed with them, nor had they seen any OT plan of activities for Mr J whilst he was in hospital.
23. Mr K said that they had not been informed about the OT visit to Mr J’s flat after his admission to hospital to assess the risk levels. The family had noticed that the support worker’s recollection of events about Mr J’s behaviour and skills at the time of the assessment differed from that recorded in the OT’s assessment. However, they had also noted that he had, despite his stay in hospital and reduced physical activity, still been able to get up and down the stairs without any problem.
24. Mr K said that Mr J had been greatly distressed by his continuing stay in hospital and unhappy throughout his time there. He had clearly indicated that he wanted to go home to his wife. He was aware that Mr J had spent at least one day crying and just saying the word ‘home’. Mr J had been locked in at the hospital, and the family had not been allowed to see his bedroom there. Mrs N had not been able to visit Mr J very much; the Coquet Trust workers had taken her to the hospital, but they had had to get there by public transport, which had meant taking two buses. The journey time took about two hours and this had eaten into the support time that had been allocated. Mr K said he had not been informed about how the support hours that had previously been allocated to Mr J by social services had been used. Mr J had been asleep most of the time he was in hospital and when the Coquet Trust workers had arrived with Mr J’s wife they had apparently let him sleep, instead of taking him out to exercise and get fresh air, and taken Mrs N to the canteen.
25. Mr K said that he suspected that Mr J had had low blood pressure, both when in hospital and when he had moved to the care home. Mr J’s feet had often been blue and Mr K had had to rub them to get his circulation going. Mr K also said that in 2003 Mr J’s toe nails had been allowed to get overgrown to the point that they had been like claws and that this had affected Mr J’s mobility. He had personally cut Mr J’s toenails when Mr J had visited him as they had been equal to a whole shoe size. Mrs L recalled that sometime prior to Mr J’s admission she had asked for a chiropodist to attend to Mr J, but that this had not materialised. They had then privately arranged for a chiropodist to attend to Mr J’s feet. Mr K said that when Mr J went to live at the care home his nails had returned to a claw like state.
26. No one had suggested to the family that Mr J could stay with them temporarily to give him a break. In fact Mr K had indicated to the hospital that Mr J could stay with them temporarily, but no one had followed this up, and Mr J had not been allowed to spend Christmas with them. They had also been informed by social services, after Mr J had moved to the care home, that he and Mrs N could not have a short holiday with the family. This had apparently been on the grounds that Dr B had thought that a new environment would not be beneficial to Mr J. Mr K and his wife noted that Mr J and Mrs N had often stayed with them for short breaks over a period of many years and had consequently been familiar with their home, and the surrounding area, including the neighbourhood and town. In the light of this, they considered that not allowing Mr J to stay with them had been a particularly cruel decision and amounted to a denial of family life for them and for Mr J. Mr K later told us that Mr J could have stayed with him and his wife permanently, but they had never been given a chance to discuss the matter.
27. The family said that they had not seen a copy of the CT scan. They had not been aware that Mr J needed glasses and had been doubtful whether they were right for him. Mr K said that Mr J seemed to use them as a fashion accessory, but that he had enjoyed cleaning them, which he was always doing.
28. Mr K said that it was his view that concerns about Mr J apparently raised in 1998 by the Coquet Trust had resulted in him being labelled as having dementia – consequently, other possible causes of his symptoms had been overlooked. Mr K said that they had not been aware of any concerns; all reports and discussions about Mr J with the Coquet Trust had been positive and complimentary.

The role of social services

29. The family said that social services had not communicated with them at all, even after they had raised their concerns about Mr J’s situation and had made it clear that they wished to be involved and kept informed. As they understood it, social services would have been expected to have included and involved the family fully, and to have been far more proactive in intervening and providing more leverage on Mr J’s behalf. This had not happened and consequently the family had been excluded and not given the opportunity to provide information that would have been key to assessing Mr J properly. Mr K considered that social services had failed to act in Mr J’s best interests. He said that he believed that, had Mr J received the right support, and been properly assessed taking account of the family’s knowledge of him, Mr J would have had a better quality of life whilst in hospital and in the care home, and would have still been alive today. Instead, the quality of Mr J’s life had been poor and he had been deeply unhappy.
30. Mr K said that he was aware that social services had been seeking alternative accommodation for Mr J. He had privately tried to contact a local authority housing officer about Mr J’s situation. Mr K said that he had not been informed that Mr J had been registered with Your Choice Homes in Newcastle, and he had been unaware that Mr J could, once registered, have nominated someone to look for accommodation for him. The family recalled that in March 2006 they had been told that the care home had been identified as a possible temporary housing solution. They had been informed that it was self-contained, but that had not been the case. It was on the second floor in a home for the elderly and the stair and lift access were locked, because of concern that Mr J might try to access these and might fall. He was therefore effectively locked in. It was also difficult for the family to get access – access to Mr J’s flat could only be gained through the care home and the entrance to that was locked. The family had had to sign in and out when they visited. There had also been no landline in Mr J and Mrs N’s flat. Mobile phones were provided, but these were expensive to use and were often switched off; Mr J would also lose or break them. This meant that the family had found it very difficult to communicate with him. Nevertheless, neither the social services, nor the Coquet Trust, had made any real attempt to facilitate Mr J’s communication with his family.
31. Mr K said that he had indicated to Mr J’s wife that the care home was unsuitable for them. However, she said that she had been told that if she did not agree to the care home, Mr J would not be able to leave hospital. Mr K thought that this had put pressure on Mr J and his wife to accept an unsuitable property. Given their learning disabilities, he considered that that had been inappropriate and amounted to manipulation.
32. Mr K said that Mr J and Mrs N had not needed 24-hour support (as provided in the care home); they needed to be returned to their old home or moved to suitable accommodation and provided with appropriate support that would allow them to live as independently as possible and keep Mr J’s skill and activity levels up. Mr K added that, in order to provide 24-hour support, many different workers had been attending and that this had meant that they had been unable to build up helpful relationships with staff. As it was, Mr J had been very unhappy at the care home and had frequently been tearful. Further, the limitations of the accommodation had not helped Mr J’s and his wife’s relationship.
33. Mrs M recalled that a neighbour would have been happy to have let ground floor accommodation to Mr J and his wife. However, they understood that the accommodation had been turned down because it had been at market rent, which had been too expensive. Mr K recalled that after Mr J had moved to the care home one of the workers there had been keen for him to return to his old flat and had been exploring the possibility of installing a stair lift.
34. Mr K said that he was very dissatisfied with the way that social services had handled his complaint. First, the 24 points considered in the Stage 2 complaint had not been his; secondly, the family had not been interviewed, although they had wished to be; and thirdly, not all of the relevant staff had been interviewed. Mr K said that he did not accept that the geographical distances and the amount of written material made it unnecessary to interview them. Finally, he had not been happy with the findings or with the fact that the time taken to investigate the complaint had meant that the main focus of the complaint, which had been to get Mr J out of hospital and then out of the care home, had become unachievable.
35. Mr K said that the family were also not entirely happy with the outcome of the Stage 3 panel’s review. They considered that social services had wrongly been exonerated to a large extent. Mr K pointed out that the family had not been told what action social services had taken to ensure that families were communicated with appropriately in cases such as theirs, despite that being one of the Stage 3 panels recommendations. Nor had they been informed as to whether Mr J’s case had been brought to the attention of the social services inspectorate, which had been another recommendation.

Mr K’s further comments on events on 6 and 7 April 2007

36. Mr K said that Mr J had appeared to be fine when they had spoken on the telephone in the early evening of 6 April 2007. When a carer from the care home telephoned the next day to say that Mr J was being admitted to hospital he had indicated that Mr J was not seriously ill and would be out in a few days. When Mr K arrived at the hospital he had been shocked by Mr J’s condition. He really wanted to establish the facts, as far as possible, about what had led to Mr J’s sudden admission to hospital, when he had seemed well shortly before admission. Mr K said that he was aware that carers were not medics, but he needed to know the course of events.