Introduction

1. Mr K’s complaints span the remits of the Health Service Ombudsman and the Local Government Ombudsman. We both agreed that a joint investigation leading to the production of joint conclusions in one report seemed most appropriate. Mr K agreed to this approach. This report sets out our findings, conclusions and recommendations with regard to those aspects of Mr K’s complaints which we agreed to investigate.

The overarching complaints

2. Mr K complained about the care and treatment provided to his late brother, Mr J. Mr J had Down’s syndrome. From 1989 onwards, with support provided by Newcastle City Council (the Council) through the Coquet Trust,1 he had lived independently in rented accommodation in the community; and he lived from 1992 onwards with his partner, Mrs N, whom he married in 1996. In November 2005, owing to concern about significant deterioration in Mr J’s skills and health, he was admitted to Northgate Hospital, managed by the Northumberland, Tyne and Wear NHS Foundation Trust2 (the NHS Trust), as an informal patient for assessment. Mr J remained in hospital for seven months, during which time he was diagnosed with dementia and epilepsy and was kept on a ward which was often locked, because of concerns about patient safety. When Mr J left hospital in June 2006, his previous home was considered unsuitable, and so he and his wife were placed in temporary accommodation (a self-contained flat at an elderly persons’ care home). The flat was also kept locked to restrict Mr J’s access outside, on the grounds of safety. Mr J remained there until 7 April 2007 when he was admitted to an acute hospital with a chest infection. Mr J sadly died there, on 9 April 2007, of pneumonia. He was aged 53.
3. Mr K complained that a failure by the NHS Trust, the Council and the Coquet Trust to provide Mr J with appropriate support, or to consult appropriately with his family about his condition, meant that important information about Mr J’s character, abilities, needs and preferences had not been taken into account when assessing what care and treatment was appropriate. This had exacerbated the deterioration in Mr J’s condition and health. Mr K said that, as a direct consequence of that failure, Mr J had been inappropriately admitted to Northgate Hospital, wrongly diagnosed and inappropriately detained against his wishes. He said that the family believed that, had Mr J received appropriate support and care, he would still be alive.
4. Mr K also complained that previous investigations of his complaint had not addressed all his concerns or acknowledged the extent of service failure. In particular, that all three bodies had not addressed his contention that Mr J had been discriminated against because of his disability, in that, owing to his Down’s syndrome, false assumptions had been made about his condition and abilities. Nor had they addressed his contention that both Mr J’s and his family’s human rights had been abused, in that Mr J had been denied his right to liberty, and he and his family had been denied the right to respect for his private and family life.
5. Mr K made a wide-ranging number of complaints to the bodies concerned and to us, which covered most aspects of Mr J’s care and treatment. Many of the complaints were addressed by all three bodies in the earlier stages of the complaints procedure, and others had not been put to the bodies previously, and it would not therefore be appropriate for us to address them in this report. For clarity, therefore, we set out below the specific aspects of Mr K’s complaint that we have investigated.

Mr K’s complaint about the NHS Trust

6. Mr K complained that the NHS Trust’s failure to communicate appropriately with Mr J and his family meant that important information had not been taken into account. Consequently:
   • Mr J had been discriminated against because of his Down’s syndrome. No account had been taken of his communication difficulties, and instead, assumptions had been made about his abilities and preferences. As a consequence, he had not been properly assessed; he had been misdiagnosed with dementia when he was, in fact, depressed and suffering from the effects of medication given him to treat epilepsy; and he had been deprived of any choice.
   • The care and treatment provided to him had been detrimental and had exacerbated his deterioration, depression and dependence on others. It had also been detrimental to family relationships, and thereby caused distress.
   • The NHS Trust had been the wrong place for Mr J. He had been detained against his wishes, and therefore in contravention of his human rights to enjoy family life and to liberty. Throughout Mr J’s admission the NHS Trust (particularly through the actions of medical staff, Dr A and Dr B) had failed to address Mr K’s concerns. As a result, Mr J had endured a miserable time in hospital.
   • Mr J’s family’s rights had been overridden – they had been excluded from the
     decision-making process in respect of Mr J’s care and treatment.
7. Mr K also complained that the NHS Trust had not dealt adequately with his complaints, in that they had not fully addressed these issues.

Mr K’s complaint about the Council

3. Mr K complained that social services had similarly failed to communicate with Mr J’s family, and that important information about Mr J had accordingly not been taken into account. A failure to provide appropriate care and support, and to actively promote Mr J’s best interests, before, during and after his stay in hospital had exacerbated the deterioration in Mr J’s condition, skills and abilities. In particular, social services had failed:
   • To provide appropriate support or educational, leisure and work activities. Consequently, Mr J’s loss of skills had been exacerbated and his distress, depression and dependence on others had increased.
   • To act in Mr J’s best interests by securing a timely discharge for him, or by challenging the view that he should not have a short holiday with his family.
   • To pursue suitable accommodation. Following Mr J’s discharge to unsuitable temporary accommodation his liberty and contact with his family had remained restricted.
   • To communicate effectively with Mr J’s family, or to facilitate Mr J’s communication with them, thereby excluding them from decisions.

Mr K’s complaint about the Coquet Trust

9. (Mr K’s complaint was dealt with as part of the complaint about the Council as they commissioned these services.) Mr K complained that:
   • there had been a failure to communicate effectively with Mr J’s family prior to his admission to hospital;
   • there had been a failure to provide adequate care and support prior to, during, and after, his stay in hospital; and
   • support workers had failed to facilitate Mr J’s communication with his family following his discharge.
10. Mr K further complained that, in responding to his complaint, the Council had not properly addressed his concerns.

The Ombudsmen’s remit, jurisdiction and powers, and the basis for our determination of the complaints

11. We have set out in Annex A our respective remits and relevant powers. Annex B provides a detailed explanation of how we determine complaints that injustice or hardship has been sustained in consequence of service failure and/or maladministration. This explanation includes full details of the general and specific standards that we apply, including disability and human rights considerations, and the specific guidance and legislation relevant to the matters under investigation in this case.
12. At the time relevant to these events, the Department of Health (DH) had published a national strategy and objectives for improving the lives of people with learning disabilities, as well as guidance to all health and social care providers as to what the expectations on them were (Annex B, paragraph 26). A key objective was ‘To enable people with learning disabilities and their families to have greater choice and control over where and how they live’. The subsequent guidance providing a framework for effective mental health care required service providers to draw up a care plan, in consultation with the service user, their carers and families, which set out the service user’s needs, the care to be provided, and also to identify a key worker to monitor and
    co-ordinate care.
13. Subsequently, in 2004, following a European Court of Human Rights ruling in a specific case (the Bournewood case³), legislation and guidance were introduced, applicable to both health and social care services. This expressly intended to make sure that no one could be admitted as an informal patient to a mental health hospital and then be detained there without any documented record of the individual’s initial consent to admittance, of regular reviews of their consent status, and of the reasons as to why they should remain in the institution. The DH guidance also highlighted the importance of involving family, friends and carers in care planning for the individual requiring mental health care, of keeping them appropriately informed, and of helping patients to retain contact with family and friends.

This investigation

14. During this investigation our staff have examined the available relevant documentation from the NHS Trust, including Mr J’s medical records and information about the attempted local resolution of the complaints. We have also considered papers from the Council and the Coquet Trust: social services assessments of Mr J; correspondence with the Coquet Trust regarding the level of support that Mr J required; daily carers’ notes both prior to and after Mr J’s admission to hospital in November 2005; Mr J’s housing file; and the attempted resolution of the complaint by the Council.
15. We have taken account of Mr K’s and the family’s extensive comments, as set out in his correspondence and at interview. These have been set out in some detail in Annex C as we believe that they provide a helpful context, in terms of giving both some insight into Mr J’s character and abilities as the family knew him, and also a better understanding of the family’s experience and concerns.
16. We have also considered the written comments of the NHS consultants named in Mr K’s complaint, namely Dr A and Dr B, and have set these out in some detail in Annex D, together with the further information provided by the NHS Trust in response to our enquiries.
17. We obtained specialist advice from two professional advisers: a Consultant Psychiatrist with a specialism in Learning Disabilities (the Psychiatric Adviser) and an experienced senior nurse (the Nursing Adviser). Their advice and comments are set out in more detail in Annex E. Our professional advisers are specialists in their field, and in their roles as our advisers they are completely independent of any NHS body.
18. The draft report was shared with Mr K, the NHS Trust, the Council and the Coquet Trust. Their comments on the provisional findings were also taken into consideration before we reached our final conclusions.
19. In this report we have not referred to all the information examined in the course of the investigation, but we are satisfied that nothing significant to the complaint or our findings has been omitted.

Summary of our decisions

20. Having considered all the available evidence related to Mr K’s complaint and taken account of the clinical advice we have received, we have reached the following decisions.

Overall

21. Mr J’s health and social care needs were clearly complex and required that he should have, in line with the relevant guidance, a properly co-ordinated and documented health and care plan, with an identified key worker to monitor and co-ordinate all of the services, to ensure that information was appropriately shared, and to ensure that Mr J’s and his family’s wishes were taken properly into account. The role of the key worker is always important, but where the person receiving the services concerned is vulnerable, that role is clearly critical. Yet that did not happen here. As a result, there was no one individual involved in Mr J’s care taking an overall view and representing his best interests. Further, and possibly as a result of that significant failing, the NHS Trust, the Council and the Coquet Trust jointly failed to involve Mr J’s family sufficiently in planning his care, which meant that important opportunities were missed to try to ensure that Mr J got the best out of his everyday life. Even more significantly, those bodies also failed to take appropriate steps to demonstrate that proper consideration was given to Mr J’s basic human rights (specifically to liberty and to a family life) when decisions were being made as to his care needs. As a result of those failings, opportunities were not taken to assess Mr J’s needs promptly and appropriately, with due regard to his rights, best interests and wishes, and his relationship with his wife and family. This was highly likely to have had some impact on the quality of his life, and hence his
    well-being, in the last 18 months or so of his life. Further, Mr J’s family were also wrongly denied the opportunity to contribute to his care planning, and will never now know if they could have made a difference to the quality of Mr J’s life in those last months; that uncertainty is undoubtedly a cause of significant and ongoing distress to Mr K and the rest of Mr J’s family.

Complaint about the NHS Trust

22. We uphold the complaint about the NHS Trust in part. We found that there was significant service failure in terms of failing to follow guidance and best practice and to:
    • document the assessment of Mr J’s capacity to consent both to his admission and to his continued stay in hospital, and thereby show that Mr J’s human rights were being adequately protected;
    • involve Mr K and the family more fully in Mr J’s care planning (including contacting Mr J’s family prior to Mr J’s admission to hospital) to ensure that Mr J’s wishes and best interests were fully taken into account in the care and treatment he received.

    However, we found that the clinical care and treatment provided by the NHS Trust, including the decision to admit Mr J to hospital were, on the whole, reasonable, as was the handling of Mr K’s complaint.

Complaint about the Council

23. We uphold the complaint about the Council in part. We found serious service failure by the Council, in that they did not:
    • document adequately why Mr J had been effectively detained in unsuitable, locked accommodation for too long, and thereby demonstrate that his human rights were given proper consideration;
    • take appropriate and timely action to find permanent suitable accommodation for Mr J and his wife;
    • promote sufficiently Mr J’s contact with his family.

    We did, however, find that the investigation of Mr K’s complaints had generally been thorough, and that the recommendations that had been made during the statutory complaints process to remedy shortcomings had been implemented.

Complaint about the Coquet Trust

24. We do not uphold the complaint about the Coquet Trust. It is clear that the Coquet Trust had been fully aware of the key importance to Mr J of regular contact with and support from his family. Following his discharge to the care home in particular, they had supported Mr J to have daily telephone contact with his family and had updated the family daily on Mr J’s
    well-being over the previous 24 hours.
25. We have also found no evidence that the Coquet Trust demonstrated serious failings in carrying out their caring role. Although we found that the Coquet Trust’s record keeping had sometimes been poor, the records made in the period just before Mr J’s death showed that the staff did contact the GP and the community nurse about Mr J’s health at that time, and that neither the GP nor the nurse had expressed any particular concerns. We are therefore satisfied that there is no evidence to suggest that poor care or monitoring by the Coquet Trust’s staff contributed to Mr J’s death, as Mr K believed.