Annex F – Chronology of key events

1992 – 2003

Mr J had Down’s syndrome. He was an active, outgoing and sociable man who had originally lived with his mother, but from 1989 onwards had lived independently in the community; from 1992 onwards this was with his partner, Mrs N (who also has learning disabilities), whom he married in 1996. Day-to-day support to help Mr J and his wife maintain their independence in rented accommodation was provided by the Council; from 1995 onwards this was through a contract with the Coquet Trust, who provided local support workers. In 1998 Mr J’s mother died. In 2003, one of the carers who had been providing support for Mr J for a long time, and whom Mr J considered a friend, moved away from his role as Mr J’s carer.

Until 2003 Mr J had had a work placement in an office doing photocopying two days a week, but this was terminated when it was considered that Mr J could no longer cope with it. (No other placements were found for Mr J, other than helping out for a few hours a week in the Coquet Trust office, until the autumn of 2005.)

2004

During 2004 a consultant clinical psychologist, who had assessed Mr J on several occasions since 1998, concluded that Mr J could be suffering from a loss of skills associated with a process of early ageing.

7 April: The Coquet Trust requested funding for more support hours for Mr J (which were then 15 hours each for him and Mrs N) from social services, due to concern about changes in his behaviour and a deterioration in his abilities.

30 July: Social services assessed Mr J.

3 November: The Coquet Trust requested an update from social services.

2005

During much of 2005 social services and the Coquet Trust corresponded about Mr J’s support needs, with the latter pressing social services to fund extra hours in response to the continuing decline in Mr J’s skill levels and functioning. They raised particular concerns about his mobility problems (increasing unsteadiness and his wife had reported that he had had falls), changes in mood and memory difficulties, which meant that many tasks took longer for Mr J to complete and that he needed repeated prompting.

4 April: Mr J was reviewed again by social services. Social services disputed (in April/May) that Mr J needed increased support.

3 September: The Coquet Trust’s service manager wrote to Mr K regarding the outcome of a meeting that had been held with social services to review the support provided to Mr J. The service manager said that it had been agreed by social services that Mr J and his wife would be allocated a nominated care manager, and that more support around meal preparation and activities for Mr J would be provided. Social services would also try to find Mr J suitable employment. He hoped that the agreed action would allay some of Mr K’s concerns and noted that:

‘undoubtedly there have been lapses in the past from the high standards which you are entitled to expect, and which the Trust sincerely aims to provide, and it is not inconceivable that others may occur in the future: unfortunately in this work it is not always possible to achieve everything which we would wish to achieve, and often any achievements only take place over an extended period.’

17 October: In October 2005, after Mr J had recently required police assistance to return home after becoming confused and anxious in public without support, various further assessments of Mr J’s needs and abilities were carried out. An initial assessment was carried out by an occupational therapist (OT) in response to concern about Mr J’s use of stairs. The OT recommended ground floor accommodation.

25 October: Mr J had a multidisciplinary assessment, which had to be abandoned because of Mr J’s difficulty and distress with carrying out the tasks. It was noted that Mr J was showing signs of a decline in cognitive and adaptive skills, with an increase in ritualistic behaviour which would have a major impact on his care needs – his care package needed to be reviewed and updated.

October: Social services agreed to fund 21 hours support a week for Mr J (and the same for his wife).

2 November: Mr J’s GP made an urgent referral to the NHS Trust because of concern about a marked general decline in Mr J’s condition; he noted a recent history of falls and brief spasms suggesting epilepsy.

9 November: Social services assessed Mr J again.

11 November: Mr J was seen by a Consultant Psychiatrist (Dr A) whose initial assessment was that Mr J was suffering from depression and prescribed medication. However, she noted that there might be other underlying causes for Mr J’s deterioration. Accordingly a nurse from the community learning disability team (CLDT) was asked to visit Mr J at home, and Dr A referred Mr J for a CT scan and an EEG. She also requested an application form for rehousing. It was noted that Mr J’s brother was being kept up-to-date and was in full agreement with the current action being taken with regard to Mr J. (Mr K strongly disputes that he knew anything about these events.)

14 November: Dr A wrote to the GP. She noted that Mr J had regular contact with Mr K. Concerns about a change in Mr J’s behaviour and a deterioration in his condition were noted, including that Mr J’s wife had reported that he had fallen down several times. It was noted that at the appointment Mr J ‘looked the picture of misery’. He could not give any account of himself and had marked psychomotor retardation. She also noted that as Mr J’s wife did not attend the appointment, she had had to rely on what Mr J’s carers could report. Dr A asked to see Mr J with his wife in two weeks, detailed the medication she had prescribed, and said that she would arrange an EEG as soon as possible. If there were urgent concerns, an earlier appointment could be arranged. Dr A copied her letter to the Coquet Trust, the CLDT nurse and Mr J’s social worker.

16 November: Mr J was seen again with his wife by Dr A. She recorded that Mr J and his wife had, after lengthy discussion, agreed to admission to Northgate Hospital as an informal patient for a five to six week assessment. (Dr A later wrote to the GP that the CLDT nurse had been very concerned about Mr J after visiting him and his wife at home; at the 16 November appointment Mrs N had become distraught and had been aggressive towards Mr J. Mr J had been upset and wept for about two hours. After discussion, his wife had agreed that it was in Mr J’s best interests to be admitted for further assessment. Mr J had also agreed and was admitted.) There was no record of any assessment of Mr J’s capacity to consent to admission being carried out.

17 November: Dr A wrote to the local acute hospital saying that Mr J had presented with a possible chronic subdural haematoma.16 She requested a CT scan and listed Mr J’s symptoms.

19 November: Dr A telephoned Northgate Hospital to tell them that she had had the initial results of Mr J’s CT scan. This showed that there had been some changes, but did not indicate any urgent problem. She would therefore wait for the full results.

22 November: A service user’s form regarding consent to share information (about his health and treatment) was completed for Mr J, saying that he did not have the capacity to consent and did not understand the implications of sharing information. (Several similar forms saying the same thing were completed over subsequent months, although there is no record of a formal assessment of Mr J’s capacity being undertaken.)

1 December: A CPA meeting was held with Mr K present. Mr J’s social worker was unable to attend due to sickness. At the meeting Dr A told Mr K that she had discontinued Mr J’s antidepressant medication in order to be able to carry out baseline assessments of his blood pressure, mental state, and fit frequency. Dr A told the meeting that Mr J had cognitive decline and that it was proposed that Mr J’s care should be transferred to another consultant psychiatrist, Dr B. The nursing reports prepared for this and subsequent CPA meetings all recorded that Mr J said that he wished to be discharged to live with his wife as soon as possible.

7 December: Mr J was referred to a speech and language therapist (SALT).

19 December: Mr K discussed Mr J’s condition with Dr B on the telephone.

23 December: A different social worker called the NHS Trust to say that he would be Mr J’s social worker from then onwards and that he would arrange a meeting with Mr J’s family as soon as possible.

29 December: Mr K raised a range of concerns with NHS Trust staff about Mr J’s care and treatment on the ward, including the decision to put Mr J on a soft diet (he considered it to be unnecessary); Mr J’s restricted lifestyle and lack of activity, which he believed was exacerbating Mr J’s decline and depression (‘the ward was like a prison’); and that there was a lack of communication with Mr J’s family. Mr K asked when Mr J would be discharged and expressed dissatisfaction with the way social services were dealing with promoting Mr J’s best interests. He also complained about the decision to stop prescribing antidepressants. Mr K said that Dr B had not answered his questions about why she had not asked him for information before coming to a view about Mr J.

The hospital records show that these matters then continued to be raised with the staff over the telephone by Mr K and Mr J’s other siblings, when they called to ask how Mr J was, or when visiting.

2006

6 January: The SALT again recommended that Mr J should have a soft moist diet at all times and be supervised when eating and drinking.

10 January: Mr J, Mrs N and the OT visited Mr J’s home in order to carry out an assessment. The OT noted that not only was the flat on the first floor, reached via a 14-step stairway, but the interior was also uneven with stepped access into several rooms, which meant that there was a high risk of Mr J falling. The OT considered that it was too dangerous for Mr J to return there.

12 January: An evidently difficult CPA meeting (which Mr K was asked to leave) took place. Mr K was told that Mr J had dementia and epilepsy and would need 24-hour care in future, but could leave hospital as soon as social services could provide appropriate support. (Following this meeting, staff did not ask Mr J’s family to attend further CPA meetings, but it was noted in the files that the family should be kept informed about what had been discussed and agreed.)

Following this meeting, and at Mr K’s instigation, Mr J was subsequently assigned an advocate from the advocacy project Skills for People, who attended all the CPA meetings from 9 February onwards until she left the project at the end of May 2006.

At the same time, to reduce the impact on patient care on the ward, the NHS Trust introduced some telephone and visiting guidelines for Mr J’s family, which included restricting the number of telephone calls to Mr J’s ward to twice a day, and the family’s time on the ward to two hours a day, but did say that the family could take Mr J off the ward for an unspecified amount of time when they wished.

16 January: A CPA meeting again confirmed that Mr J could be discharged with appropriate accommodation and support. It was noted that social services had lead responsibility for finding suitable accommodation for Mr J and his wife. Dr B advised that temporary accommodation was not in Mr J’s best interests, as it would mean his having to move twice.

18 January: Dr B wrote to Mrs L in response to the concerns raised by the family.

30 January: Mr J’s social worker made a note that Dr B had said ‘Mr J must not go home – far too dangerous’.

31 January: Your Choice Homes sent Mr J a medical form regarding his application for housing.

6 February: Mr J’s wife and social worker visited him. The social worker discussed accommodation and noted that Mr J said that he wanted to leave hospital and live with Mrs N. The social worker later recorded speaking to Your Choice Homes about likely timescales and being told that the current waiting list meant that it was likely to be at least six months before a property would be identified.

9 February: A CPA review took place. It was decided that, because of the time that Mr J had already been in hospital and Dr B’s view that a further lengthy stay in hospital would be detrimental to Mr J, an interim placement would be better than a lengthy wait for a permanent placement. Mr J’s social worker indicated that a first floor flat at the care home would become available from 8 March.

10 February: Mr J attended his woodwork class accompanied by a Coquet Trust worker.

14 February: Coquet Trust staff helped Mr J to complete the housing medical priority form which he had been sent in January.

16 February: An OT visited the care home and recommended adaptations (grab rails in the bathroom and a shower chair) that needed to be made before Mr J and his wife could move in.

22 February: Your Choice Homes received Mr J’s completed medical form.

23 February: A further CPA review took place. It was noted that Mr J needed verbal and physical prompts to dress and for daily living tasks. He had been incontinent and now needed prompts to use the toilet. He was tearful at times and wished to live with his wife as soon as possible.

Mr J and his wife subsequently visited the care home.

28 February: Coquet Trust staff took Mr J to his woodwork class.

3 March: Mr K made formal complaints against the NHS Trust, social services and the Coquet Trust. In respect of the Coquet Trust, Mr K complained that the Coquet Trust had failed to communicate adequately with him about Mr J’s situation, and that it had failed to press social services to fund more support for Mr J. He also complained that the support provided for Mr J had been inadequate, both prior to and during Mr J’s admission to hospital.

In his complaint to the Council, Mr K complained that:

•    
• Social services’ support for Mr J had been inadequate and negligent since 2003, and that had contributed to Mr J’s general decline.
•    
• No one from social services had attended the CPA meeting on 1 December 2005.
•    
• Social services had not communicated with Mr J’s family.
•    
• He had asked for details of Mr J’s support packages since 1989, but had been informed by the social worker that it was unlikely those records still existed.
•    
• Contrary to what had been promised, he had not heard from the learning disability manager since a meeting they had had on 25 January 2006.

In his complaint to the NHS Trust, Mr K complained about Mr J’s admission to hospital, the diagnosis that had been made and about a number of different aspects of the care and treatment provided to him.

27 March: The Coquet Trust’s general manager responded to Mr K’s complaint saying that the Coquet Trust had always tried to work together with Mr J’s family to get the best outcome for Mr J. It had asked social services to reassess Mr J, as it had considered that he would benefit from more support. Mr J had been reassessed and the hours increased, but shortly after this he had become poorly and had been admitted to hospital for assessment.

The general manager went on to say that, following further assessment, it had been decided that it would be unsafe for Mr J to return home and the Coquet Trust had then been asked to provide Mr J and his wife with a substantially increased level of support. It was hoped that, in the long term, suitable accommodation would be found but vacant properties were hard to find. In the meantime, temporary accommodation (at the care home) owned by the Council had been found. The flat ‘would be very similar to living in their own house in the community’: a positive outcome enabling Mr J to live with his wife and have contact with staff who knew him well, with some additional staff, which would allow him to maintain his health, well-being and independence.

The Coquet Trust said that, following the OT home visit, it could not agree to continue as the support provider if Mr J moved back into his old home because it was unsafe. Mr K’s concerns about a move for Mr J were noted; however, the assessment was correct, and Mr J would benefit from additional support hours and ground floor accommodation.

(The Coquet Trust did not take any further action in relation to Mr K’s continuing dissatisfaction, because this went onto be dealt with under the Council’s Stage 2 complaint and Stage 3 procedures.)

10 April: The learning disability manager responded on behalf of social services to the Stage 1 complaint. She said that a representative from social services had not attended the CPA meeting due to staff sickness. As regards communication failures, the learning disability manager said that following her meeting with Mr K, she had asked the staff involved with Mr J to keep Mr K informed. She apologised if Mr K felt that he was still not receiving important information and felt unable to communicate with Mr J’s social worker, but added that his request that Mr J’s social worker be removed could not be agreed, especially given the need to secure a discharge. The situation would be reviewed once Mr J was back in the community.

The learning disability manager said that she did not agree that Coquet Trust staff had neglected Mr J and his wife, but acknowledged that a more robust review system should have been in place. However, she pointed out that that would not necessarily have resulted in increased care hours. Due to the change in Mr J’s circumstances, it had been necessary to seek different activities for him, which had coincided with Mr J’s admission to hospital.

The learning disability manager said that a return to Mr J’s home would have been preferred, but that that would be unsafe. A temporary move had been the only option available to secure Mr J’s discharge from hospital. Social services were still looking for permanent accommodation in the same area as his old home; they were in contact with housing associations, private landlords and the Council’s housing department.

Finally, she apologised for her failure to respond to Mr K following their meeting; she had mistakenly believed that other staff would be in communication with him.

12 April: The NHS Trust responded to Mr K’s complaint. The chief executive summarised the background to Mr J’s admission and Dr A’s reasons for admitting him. He explained that the NHS Trust’s medical director had spoken to Dr A and had examined the case notes and supported Dr A’s decision.

The chief executive apologised, however, for not telling Mr J’s family about his situation prior to admission, this had not been possible because of the specific circumstances and the urgency. He also apologised if Mr K felt that he and the rest of Mr J’s family had been ignored, and more specifically for, not discussing issues relating to Mr J’s condition prior to the meeting of 1 December 2005; if Mr K felt that the conversation with Dr B on 19 December 2005 had been unhelpful; and if staff had been unable fully to explain Mr J’s EEG results. It was acknowledged that the CPA meeting held on 12 January 2006 had been difficult for all concerned.

The chief executive went on to say that Northgate Hospital was a renowned specialist hospital, expert in issues relating to Down’s syndrome. Mr J’s previous assessments by psychology staff from 1999 onwards were noted. He summarised the clinical reasoning behind the assessments and treatment plans including the decision to place Mr J on a soft diet. He agreed that Mr J would benefit from more exercise, but said that this was difficult to achieve given limited staff resources, efforts to arrange more exercise outside the ward area would continue. He also detailed the OT assessments and the relevant concerns regarding Mr J’s mobility, perception and safety on stairs.

The chief executive concluded that the NHS Trust was anxious to discharge Mr J to a suitable environment. Possible temporary accommodation had been identified which Mr J and his wife had visited and were happy with. A CPA meeting had been arranged for 18 May 2006 and it was hoped that Mr J would be discharged shortly after this. Hospital staff would remain in contact with Mr K and inform him of progress regarding discharge.

3 May: A note was made in the NHS Trust’s records saying that the following lessons had been taken from Mr K’s complaint.

•    
• In some situations a meeting with the family might be indicated before formal review/CPA, and local ward procedures were to be reviewed in this respect;
•    
• liaison between wards and community nurses in Newcastle needed to be improved;
•    
• admission procedures should be reviewed to ensure appropriate contact with the local CLDT.

15 May: The NHS Trust’s physiotherapist carried out a further assessment and found that Mr J’s balance and mobility had deteriorated significantly over the preceding few months and that he now had a very high risk of falling. She recommended that Mr J should use a wheelchair for all outdoor activities, and that he should be accompanied when ‘moving from one environment to another’ such as from outside to inside a building. At ‘high risk’ times of the day, such as first thing in the morning, or when staff felt that he was unsteady, his wheelchair should be used. The OT found that although Mr J’s physical abilities were fluctuating daily, he would ultimately need full use of a wheelchair and a mobile hoist in the bedroom.

18 May: In response to Mr K’s objections to the proposals for Mr J’s future accommodation, Mr J’s advocate had referred the matter to the independent mental capacity service (a service established under new arrangements brought in under the Mental Capacity Act, which were the responsibility of local authorities); and Mr J had been allocated an independent mental capacity advocate (IMCA). The IMCA had been asked to consider Mr J’s best interests in respect of his accommodation, and ascertain if his own wishes, feelings and rights had been considered in the decisions regarding his discharge from hospital. In her report (dated 18 May) the IMCA noted that, although, given his diagnosis, Mr J’s condition was unlikely to improve, and he would no longer be able to go out independently, he was not benefiting from being in hospital, separated from his wife and unable to lead a life that included enjoying some of his interests in a familiar environment with support staff that he knew. The IMCA agreed that Mr J would be at risk if he returned to his old home, however, she considered that Mr J should be discharged as soon as possible to temporary accommodation, as this would enable him to live with his wife. The IMCA said that it was important that the search for a local downstairs flat for Mr J and his wife should continue, and she passed on the name of a landlord. She recommended that the search for accommodation should include this possibility, as well as housing association and shared ownership accommodation.

The IMCA attended the CPA meeting that same day.

12 June: Mr J moved to the care home with his wife. (The Council decided to keep the couple’s tenancy of their former home due to Mr J’s deteriorating health and the need to ensure that Mrs N retained her rights to the tenancy.)

13 June: Social services wrote to Mr K to tell him that Mr J had moved. (Mr K subsequently complained that he did not receive the letter for a week.)

3 July: The action plan for Mr J’s support in the care home required that the carers support Mr J in telephoning his family each day, at a time suitable to Mr J.

13 July: Mr K complained to the Healthcare Commission.

20 July: The Coquet Trust wrote to Your Choice Homes asking for Mr J’s medical priority to be reinstated. They thought that he had lost his priority status on 3 July 2006 because he had not previously bid for properties. Your Choice Homes was told that Mr J had been unable to bid because he had been ill and in hospital; the Coquet Trust added that he was now in temporary accommodation but that his need for ground-floor two-bedroom accommodation remained urgent.

The Coquet Trust wrote on the same day to the local authority’s Supporting People officer to enquire about the possibility of a Supporting People contract for Mr J, including his wife. (There is no evidence of a reply being sent, or that that matter was followed up by the Coquet Trust.)

21 July: Dr B wrote to the GP, having carried out a review of Mr J at the care home. She considered that he had settled in well and that 24-hour support appeared to be working. She said that Mr J was still able to join in activities in the community, such as swimming, and he was still able to walk within the care home’s grounds, but otherwise needed a wheelchair outdoors. No further myoclonic jerks had been recorded. On the whole he slept well. He had lost some weight since his discharge, but was still a healthy weight. He was occasionally doubly incontinent at night.

Dr B noted Mr K’s request that Mr J and his wife stay with him for a few days. She advised that any major changes to Mr J’s then current daily routine would significantly affect his functioning and emotional well-being. Whereas in the past a holiday might have been a stimulating and positive experience, she believed that an overnight stay was now likely to cause him undue stress.

27 July: Mr K asked social services for a Stage 2 investigation of his complaint.

August: The Healthcare Commission considered that local resolution had not been completed and that another attempt should be made locally to resolve the NHS aspects of the complaint.

4 August: Mr J’s social worker wrote to Mr K about his daily contact telephone call with Mr J. He said that the Coquet Trust support staff were concerned that the daily calls they made to the family (which were intended both to support Mr J’s contact with his family and to update them on Mr J’s well-being in the previous 24 hours) often lasted up to an hour, but were in the main not spent with the family talking to Mr J or Mrs N, but with the family making complaints to the staff about past and present support arrangements. That took staff away from caring for Mr J. He asked that any such complaints should be addressed to him, or to the Coquet Trust management. He also referred to Mr K’s request that Mr J should ring at a set time each day, saying that there had to be some flexibility around the arrangements to suit Mr J’s needs.

8 August: Mr J’s medical priority for housing was reinstated.

19 August: Mr K set out the issues (some of which were new) that he wanted to be considered at a local resolution meeting with the NHS Trust.

25 August: The social worker informed Mr K that the medical advice from Dr B was that Mr K’s request for a few days’ visit should not go ahead.

11 October: Mr K attended a local resolution meeting with the NHS Trust; a senior social services manager also attended. At the meeting the following action plans were agreed:

•    
• It was acknowledged that communication with the family had been inadequate and this was apologised for. Future communication with Mr J’s family would be improved.
•    
• A social services team leader would visit Mr J to carry out a formal care plan review, which would include activities. The review would involve all those who provided support to Mr J. A strategy for facilitating communication between all the various parties would also be developed.
•    
• Mr J’s consultant would be changed and a second opinion would be obtained regarding Mr J’s mobility and diet.
•    
• Regarding the care home, the meeting noted that the IMCA advocate’s report had supported Mr J’s move. This was not ideal but social services were actively pursuing permanent housing. A second opinion on Mr J’s mobility might prove helpful.
•    
• The meeting noted that Mr K had been unaware of previous referrals by the GP and the Coquet Trust to the CLDT, and the involvement of the community nurse and psychologist, until Mr J’s admission in November 2005. It was noted that correspondence had been sent to Mr J’s wife, and it had been assumed that the Coquet Trust support workers would have explained its meaning to her. It was also noted that Mr K would take practical steps towards becoming Mr J’s legal guardian.
•    
• It was agreed that monitoring of weight should be carried out in a consistent way, that is, in the same clothes, using the same scales.

18 October: Another consultant psychiatrist took over Mr J’s care.

Mr J’s condition continued to decline, and his family continued to express their dissatisfaction with the care and support being provided to Mr J. Mr J’s records indicate that Mr J was often tearful at this time, and that his wife was finding it difficult to cope. Mr K also complained about the difficulty the family were having trying to communicate with Mr J because the flat at the care home did not have a landline telephone. He said that, although Mr J had been given a mobile phone, this was expensive and Mr J had difficulty with it.

27 October: Your Choice Homes offered a property for consideration for Mr J and Mrs N. The flat was visited by Mr J’s social worker, the community nurse, the physiotherapist, the occupational therapist, two housing association representatives and two staff from the Coquet Trust to assess whether it was suitable. They decided that the bedrooms were too small to enable staff to be able to meet Mr J’s care needs (including the use of a bed hoist when required), and the offer was therefore refused. Neither Mr J nor Mr K were told about this offer.

2 November: Another offer of accommodation was made.

9 November: The NHS Trust wrote to Mr K following the local resolution meeting on 11 October to summarise the main points from the meeting and to note agreed action items (as set out in the above entry). The letter acknowledged that Mr J’s relatives had always been, and continued to be, involved as carers in supporting Mr J. The response noted that Mr K’s complaint to social services was currently being processed. The NHS Trust again apologised for shortcomings in communication and for the fact that Mr K had not been informed about the referrals by Mr J’s GP and the Coquet Trust to Dr A until after Mr J had been admitted to hospital. It explained that the CLDT had had to take action and that information and relevant correspondence had been sent to Mr J’s wife, who was his next of kin. It had been assumed that the Coquet Trust would explain to her the content of the correspondence. The NHS Trust would strive to ensure that all future communications involving Trust staff, Mr J, his family and social services would be appropriately co-ordinated. It was noted that arrangements had been made for responsibility for Mr J’s care to be transferred to another consultant. Regarding Mr J’s discharge to the care home, it was noted that Mr K had commented that there had been insufficient consultation with the family before this had happened, and that the family’s view was that Mr J should be supported to return to his and Mrs N’s flat.

13 November: Mr J’s medical priority for rehousing expired because no interest had been expressed in the properties offered.

30 November: The flat offered on 2 November was visited by Mr J’s physiotherapist, who sent the community nurse and the OT a note saying that there were steps up to the front door, the corridors were narrow and that work would have to be done to convert the bathroom into a wet room and to widen the door to the bathroom. She asked for their views.

4 December: The community nurse and the OT discussed the second property offered and decided that it did not meet Mr J’s needs and that ‘alterations would take too long and that his condition may deteriorate before being able to make to house user friendly [sic]’. The community nurse then advised the Coquet Trust to decline the property. Mr J and Mr K were, once again, not informed of this.

7 December: Mr J was admitted to hospital with a suspected chest infection and shortness of breath. He was discharged the following day as an X-ray showed his chest to be completely clear.

2007

8 January: Mr J and Mrs N returned from spending the Christmas period with Mr K and his wife.

24 January – 25 February: Mr J went to stay with Mr K and his wife.

3 April: The records hold no information about Mr J’s health on this day.

4 April: Community nurses attended Mr J to dress a sore elbow. A GP also attended and found that, although there were some noises, his chest was clear. The doctor noted that the noises identified could be due to Mr J not swallowing food properly and regurgitating it. There was no record of Mr J having a dry cough or with phlegm, or presenting with flu-like symptoms. The next support staff entry in the records indicated that Mr J was having problems eating a full meal, but implied that this was an ongoing problem and not something new in the last few days.

5 April – 6 April: No further health problems were recorded for Mr J.

7 April: Mr J was noted to be very hot, to have shallow breathing, and to be limp and unable to bear weight. He was unable to take oral medication. The GP considered he should be taken to hospital and he was admitted around lunchtime.

9 April: Mr J died from pneumonia. (No post mortem was carried out.)

2008

January: The Council issued the report of the Stage 2 investigation (15 months after Mr K had asked social services for a Stage 2 review and nine months after Mr J’s death). The report dealt with 24 heads of complaint. A brief summary of the report’s findings follows.

The investigator (a designated complaints officer within the social services department) commented that he could not question Mr J’s diagnosis. He noted that although it was clear that admission to hospital had been previously proposed, the admission on 16 November 2005 had been unplanned and urgent due to concerns about safety. He said that social services had not been involved in that decision; therefore he did not uphold the complaint that social services and the Coquet Trust had failed to inform Mr J’s family that he was going into hospital.

The investigator was critical of social services’ and the Coquet Trust’s communication with Mr K for the period covered by the complaint. He was also critical of the care and support Mr J had received in the 12 months before his admission from both social services and the Coquet Trust, particularly the failure to resolve the request for more support for Mr J, including work-type activities. However, although communication between the Coquet Trust and social services prior to admission had been insufficient, there had been a significant improvement when Mr J moved to the care home, when there had been almost daily contact.

The following complaints were not upheld, that:

•    
• Social services had not allowed Mr J to participate in decisions about his care.
•    
• The Coquet Trust should have asked social services for more support.
•    
• Social services and the Coquet Trust had failed to provide opportunities for Mr J to develop his daily living skills.
•    
• Social services and the Coquet Trust had failed to ensure that Mr J’s diet was nutritionally adequate.
•    
• Social services and the Coquet Trust had failed to inform Mr J’s family that he was going into hospital.
•    
• Social services had not protected Mr J’s right to liberty.
•    
• Social services had failed to attend the CPA meeting held on 1 December 2005.
•    
• Social services had failed to promote Mr J’s independence during his stay in hospital.
•    
• Social services had been insufficiently proactive regarding alternatives to hospital.
•    
• Social services had failed to help Mr J to maintain daily living skills in hospital.
•    
• Social services had excluded Mr K in matters relating to Mr J’s care following his admission to hospital.
•    
• The Coquet Trust had failed to bring Mr J’s clothes to hospital.

The following complaints were partly upheld, that:

•    
• Social services and the Coquet Trust had failed to inform the NHS about Mr J’s family, and relevant family history.
•    
• The Coquet Trust had failed to keep Mr J active during his stay in hospital.
•    
• Social services had failed to keep Mr K fully informed about the details of Mr J’s discharge from hospital and future care arrangements.

The following complaints were fully upheld, that:

•    
• Social services had failed to keep Mr K informed about support prior to admission to hospital.
•    
• Social services had left Mr J without support for four days a week.
•    
• Social services had failed to help Mr J find alternate work placements.
•    
• Social services had failed to contact Mr K regarding discharge plans.
•    
• Social services had failed to contact Mr K to discuss Mr J’s future and had wrongly suggested that this was the responsibility of other agencies.
•    
• The learning disability manager had failed to keep Mr K informed as agreed.

The investigator concluded that extra support would not have prevented Mr J’s health deteriorating, but might have improved his quality of life and alleviated some of the pressures at home. He made the following recommendations:

•    
• An apology from the Coquet Trust and social services for acting far too slowly to resolve the need for extra help.
•    
• An apology from social services regarding: lack of communication by a social worker, a failure to pursue housing for Mr J and delay with the Stage 2 report.
•    
• A written explanation from the Coquet Trust of why they did not find Mr J an alternative placement after 2003.
•    
• The Coquet Trust to decide in what circumstances it would be appropriate to find an advocate for a service user.

23 January: The acting head of adult social care wrote telling Mr K that social services fully accepted the Stage 2 recommendations with the exception of one. He said that it would not usually be the care provider’s responsibility to find work placements, even if there was some evidence to indicate that the Coquet Trust had accepted responsibility for this. He considered that this should have been made more evident in the review.

He apologised for the fact that a year had elapsed before the impact of Mr J’s changing circumstances had been properly understood and responded to. However, he said, additional support had been agreed within ten days of the risk to Mr J being made clear. The Council accepted that social services had had a responsibility to formulate a plan. He apologised that the social worker had failed to communicate with Mr J’s family as he should have done, and also for the fact that alternative housing had not been pursued with sufficient urgency. He concluded by apologising for the fact that the complex nature of the complaint meant that the investigation had taken longer than expected.

5 March: Mr K remained dissatisfied and asked to go to Stage 3 of the social services complaints procedure.

2 April: The Stage 3 panel was held. The panel’s role was to review the Stage 2 investigation and how the Council had sought to remedy the Stage 2 findings. The Panel concluded that the crux of the complaints was poor communication between the professionals and Mr J’s family. Consequently, Mr K had felt excluded from decision making and unable to present alternative views.

The panel considered that on the whole the
Stage 2 report had been thorough and balanced, albeit delayed. However, the panel did not consider that the response to the Stage 2 investigation went far enough. The panel concluded that the Council’s response had addressed the Stage 2 recommendations, but not adequately the substance of the complaint. Its findings were as follows:

1.    
2. That social services had not protected Mr J’s right to liberty, by uncritically accepting his admission and subsequent stay in hospital: the panel found that social services had been insufficiently proactive regarding Mr J’s condition prior to the admission to contribute to the decision making process. The ‘comprehensive’ assessment of 9 November 2005 was largely a paper exercise and requests for additional support had not been dealt with in a timely manner. After Mr J’s admission they had been actively involved in trying to facilitate his discharge, as soon as it was safe to do so.   
3. The panel considered that after admission social services had acted as quickly as they could to facilitate discharge, and took all reasonable steps to find suitable accommodation, with the exception of not sufficiently exploring the option of Mr J staying temporarily with his brother. The Panel said that responsibility for maintaining skills lay with the NHS, during the stay in hospital. Likewise, issues relating to diet, not using the stairs and wheelchair provision, were matters for the NHS.   
4. The panel noted that Mr K’s regular contact had been with the Coquet Trust. However, social services had a direct responsibility to provide relevant information, and communication with Mr J’s family had been poor. The panel understood why Mr K had felt excluded; but did not consider that he had been excluded from all matters relating to Mr J’s care; rather that social services had failed to facilitate the family’s participation. Therefore, the panel did not accept the Stage 2 conclusions on this matter and considered that this aspect of the complaint should be partly upheld.

Regarding the complaint that social services and the Coquet Trust had failed to offer adequate opportunities for daily living skills, the panel did not agree with the Stage 2 conclusions. They accepted that social services had failed to respond to the Coquet Trust’s requests for increased hours and that the latter had supported Mr J appropriately within the limits of allocated hours. Following discharge, both social services and the Coquet Trust had supported Mr J appropriately.

The panel accepted that Mr J’s admission for assessment had been unplanned but noted that plans had been in hand for a visit to prepare Mr J for admission later in the month. Mr J’s family had not been informed of this, but as Mr K had already raised concerns with the Coquet Trust about Mr J’s functioning, the panel concluded that the complaint should be partly upheld.

The panel agreed with the other Stage 2 conclusions and also found that Mr K had genuine reasons for concern about complaint handling including delay, a lack of face-to-face interviews, and poor presentation of documents.

The panel noted Mr K’s new desired outcomes:

•    
• Active involvement of families.
•    
• Learning from his complaint.
•    
• Addressing discrimination and the presumption of dementia.

The panel recommended that adult services should:

1.    
2. Provide awareness training for workers in services for adults with Down’s syndrome.   
3. Reinforce with social workers the importance of good communication with families.   
4. Review individual decision-making, in the light of the Mental Capacity Act and legislation for the protection of vulnerable adults.   
5. Share his complaint with inspectors at the next statutory inspection.   
6. Comply with government guidance on complaints.

16 April: The CLDT meeting minutes for 16 April 2008 show that Mr J’s case was discussed there. It was noted that the majority of the complaints concerned communication: 24 issues had been raised, of which 14 had been upheld wholly or in part. The importance of documenting information was noted. The minutes also state:

‘… it is vital that social workers keep the family informed at every stage of developments. … Team managers will continue to discuss issues of communication as part of supervision sessions and will continue to monitor all situations that give cause for concern.’

28 April: The Council responded to the
Stage 3 findings. The director of adult services again apologised for the failure to communicate with the family. He said that an action plan was being developed. The Council would go beyond the recommendations, and better guidance and procedures would result, especially in regard to independent providers.

He acknowledged a failure to explore extra activities for Mr J with the Coquet Trust, but said that it was impossible to establish whether Mr J would have been able to maintain his skills had these been provided.

Referring to the Mental Capacity Act, and legislation for the protection of vulnerable adults, the Director noted that 2006 policies had now been superseded by new guidance and protocols, which were regularly reviewed and updated in line with legislation and government guidance. The service was committed to continuous improvement – therefore a specific review was not necessary.

The Council would implement the remaining recommendations and had been selected by the DH to test new ways of responding to complaints across health and social care over the next
12 months, which would lead to the identification of good practice. He offered to meet Mr K and informed him about the role of the Local Government Ombudsman.

July: Mr K’s complaints against the NHS Trust, the Council and the Coquet Trust, which in March 2008 the Healthcare Commission had referred to the Health Service Ombudsman for consideration of a joint investigation with the Local Government Ombudsman, were accepted for joint investigation by both Ombudsmen.