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What offers more choice? Budgets or human rights?


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My talk on how best to deliver choice in English dementia strategy - through the market, e.g. personal budgets, or international law, e.g. human rights.

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What offers more choice? Budgets or human rights?

  1. 1. Delivering choice in the English dementia strategy: human rights or budgets? Dr Shibley Rahman Public talk given at BPP Law School on 23 July 2015
  2. 2. Introduction
  3. 3. Personal budgets
  4. 4. Personalisation • “Personalisation” has been a major aim of English social care policy for over a decade and has enjoyed broad support from all political parties. • It, in England, refers to policies aimed at making public service provision more tailored to individual service users, rather than “a one-size fits all” approach.
  5. 5. Main aims of personal budgets Melanie Henwood and Bob Hudson Journal of Integrated Care Volume 16(3) June 2008 • Choice • Control • Flexibility (also include promotion of wellbeing and independence) Uptake of personal budgets: “notoriously slow”
  6. 6. Personal Budgets and Health: a review of the evidence (Gadsby, February 2013) There are a number of drivers behind the desire to ‘personalise’ health care in England: • it is expected that personalisation is a route towards better integration of health and social care services, through its focus on the whole person; • personalisation might help to improve people’s management of long term conditions through a strategic shift towards early intervention and prevention; • personalisation will encourage the provision of services that will allow people to be maintained at home; • personalisation will improve patient experience and outcomes through promoting choice, control and flexibility.
  7. 7. European Journal of Integrative Medicine 5 (2013) 191–193 Editorial • Honey is frequently used as a traditional remedy and is thought to benefit health in various cultures. • A systematic review by Charalambous et al. (2013) explored the effectiveness of honey to facilitate healing of radiotherapy induced oral mucositis in head and neck cancer patients. • A second study on honey, a randomised controlled trial (Heidari et al., 2013), investigated whether it could improve healing and scarring after caesarean section,
  8. 8. Journal of Health Services Research & Policy 18(Suppl. 2) 1–10 Nicholas Mays (2013)
  9. 9. The cost of implementing personal budgets – Jones et al. 2009 PSSRU • costs associated with the project management structure • designing systems (e.g. design of assessment and budget-setting) • workforce training • developing and supporting planning/brokerage • managing the market • ongoing costs and anticipated cost reductions as a result of implementing personal health budgets • potential displacement of other activities as a result of the introduction of personal health budgets
  10. 10. Rogers J, Personal health budgets: A new way of accessing complementary therapies? Complementary Therapies in Clinical Practice (2010) • The drive towards evidence based health care has been very strong and growing since the 1980s. • Many commentators implicitly or explicitly refer to specific types of evidence, and typically refer to the “scientific hierarchy”. • Many complementary therapies are not supported by a strong evidence base in these terms. • However, the same therapies often enjoy significant popular usage an many service users believe strongly that such therapies are beneficial. • If public policy is to driven by issues of choice and user control, should evidence be a secondary consideration?
  11. 11. Personal Budgets and Health: a review of the evidence (Gadsby, February 2013) • Personalisation is defined by central government as “the process by which services are tailored to the needs and preferences of citizens. • The overall vision is that the state should empower citizens to shape their own lives and the services they receive” (Cabinet Office • 2007 p33).
  12. 12. The “resource allocation system” (Norrie et al., 2014) • The RAS system in particular has been criticised as “an under-funded voucher system” (Beresford, 2011). • Beresford et al. (2011a) argue that the implementation of personal budgets is experienced by users and staff as being overwhelmed by methods and systems which are tied into the structures and processes associated with traditional policy and provision.
  13. 13. Slasberg, Beresford and Schofield: Research, Policy and Planning (2014/15) 31(1), 43-53
  14. 14. Slasberg, Beresford and Schofield: Research, Policy and Planning (2014/15) 31(1), 43-53 • “The Government’s Guidance to the Care Act 2014 confirms its view: “The allocation of a clear up-front indicative (or ‘ballpark’) allocation at the start of the planning process will help people to develop the plan and make appropriate choices over how their needs are met (Department of Health, 2014, p.188).”” • “However, the Care Act itself defines a personal budget in a quite different way, making no reference to an up-front allocation. “
  15. 15. Slasberg, Beresford and Schofield: Research, Policy and Planning (2014/15) 31(1), 43-53 • Guidance to Care Act (2014) asserts: “Independent research shows that where implemented well, personal budgets can improve outcomes and deliver better value for money.” (p.151) BUT…
  16. 16. Slasberg, Beresford and Schofield: Research, Policy and Planning (2014/15) 31(1), 43-53 • The national evaluation of the individual budget pilots (Glendinning et al., 2008). • Improving Value for Money in Adult Social Care (Audit Commission, 2011). • The Financial Management of Personal Budgets (Audit Commission, 2010) • Users of Social Care Personal Budgets (Ipsos MORI, 2011).•
  17. 17. “It was concluded that service uses and managers are working in a climate of dynamic and complex organisational change, of which user involvement is an integral part, and that this has impacted on the nature of service user involvement as a new social movement. Managers need to attend to this in their interactions with service users and their organisations.”
  18. 18. Major drivers for integration in policy (Humphries, 2015) • Ageing population - “Often this requires long term support closer to home rather than single episodes of care in acute hos-pitals. “
  19. 19. Major drivers for integration in policy (Humphries, 2015) • Fragmentation - “The major reforms introduced by the Health and Social Care Act 2012 means that different parts of the NHS and care system – primary care, social care, acute hospitals, mental health and community health services – are commissioned and funded separately and subject to different governance, accountability and regulatory regimes.”
  20. 20. Major drivers for integration in policy (Humphries, 2015) • History - “Finally there is the longstanding distinction between NHS care that is mostly free at the point of use and funded through general taxation and publicly funded social care which is subject to a financial assessment – a ‘means test’. ”
  21. 21. Iliffe S, Manthorpe J. Barker & Burstow's care packages for England. BMJ. • “The market in social care has failed.” • “The Barker report depicts relations between health and social care as opaque, inefficient, inequitable, and weighted towards individual rather than collective responsibility.”
  22. 22. Lessons from the Netherlands - van Ginneken, Groenewegen and McKee BMJ 2012 • eligibility criteria should be clear and not too broad • administrative rules and regulations should be clear and workable for budget holders • adequate support should be available so that patients can use and administer their budgets without the need for broker
  23. 23. Lessons from the Netherlands - van Ginneken, Groenewegen and McKee BMJ 2012 “Increasing cost is not, however, the only problem to have emerged. There have been credible reports of fraud and, although these may not be large in revenue terms, their newsworthiness has provoked public debate.11 The assessment of eligibility is not very strict and largely based on trust, while accountability and control mechanisms are lenient.”
  24. 24. Barriers to implementation of personal budgets/self-directed support • a personal budgets system that has not yet adapted to the needs of people with dementia and their carers, and is overly complex and burdensome • lack of knowledge and awareness of self-directed support among people with dementia, carers and families • ineligibility for care funding long before the time of crisis • local authority concerns about the use of self-directed support by people with dementia and general lack of enthusiasm • challenging financial climate and funding pressures on local authorities • lack of tailored and accessible information for people with dementia and their carers, leading to a lack of understanding about personal budgets and direct payments and concerns about their use
  25. 25. Barriers to implementation of personal budgets/self-directed support • lack of addressing of real carer and family concerns about managing self- directed support • local markets that are not yet sufficiently developed to deliver a wide range of different types of dementia service • insufficient overall levels of funding in the system • the cultural attitudes of health and social care professionals who are operating in ‘silos’ • mechanisms for direct payments for people who lack capacity
  26. 26. Barriers to implementation of personal budgets/self-directed support • safeguarding concerns about using self-directed support • overcomplicated monitoring and regulatory systems • concerns about obtaining criminal record checks and reliable references for personal assistants
  27. 27. Beresford (2009) • National economy • What about people with fluctuating and deteriorating conditions? • How will flexibility be ensured with payments? • What limits will be set to how service users can spend the money? • What will be included as part of people’s individual health budget and what will continue to be part of their core NHS entitlement?
  28. 28. Hitchen, Williamson and Watkins (2015) Action Research • PHBs challenge traditional power dynamics between professionals and service-users (Coyle, 2011). • Improvements are evident across all disabilities (except older people?) (Glendinning et al., 2008). • One knowledge gap, however, concerns potential gains for carers, as carers’ research is scant, but SCIE indicate that carers could have a central role in enabling people with mental health problems to take up and manage their budgets (Newbronner et al., 2011)
  29. 29. Personalised medicine and dementia “The dream of personalised medicine is largely powered bythe successes of the personal computer and the smartphone. Can technology do the same for genome testing by driving down the price and improving the accuracy and speed? By early 2013 the answer is maybe.” “Personalized medicine or public health? Bioethics, human rights, and choice” by Distinguished Prof George J. Annas Boston University School of Public Health, United States
  30. 30. Rights based approaches
  31. 31. ‘Change here is probably not going to emerge from a committee.’ Peter Watt
  32. 32. Rights based approaches • mindful of all rights not just legal. • lawful • necessary • proportionate - incl ‘least restrictive’ • (proactive) • social movements ‘call to action’
  33. 33. Critical features • Our society tends to value, people with intact cognition above those whose cognition is compromised;’ it seems to be averse to ‘thought diversity’ often. • This had led to persons with dementia being treated in ways that have actively undermined their personhood and infringed their human rights. • With regard to autonomy, until relatively recently people with dementia were assumed incapable of making any decisions simply because of the presence of dementia. This myth even exists amongst clinical commissioners?
  34. 34. The “Independent Living Fund” - Fernandez et al. 2007 Jnl Soc. Pol., 36, 1, 97–121 The Independent Living Fund was established in the late 1980s as a compensatory source of funds for people with disabilities adversely affected by ongoing social security reforms (Glasby and Littlechild, 2002; Barnes et al ., 2004 ). Its take up – as high as 22,000 people in 1993 – was very high.
  35. 35. Convention on the Rights of Persons with Disabilities (“CRPD”) Article 1 - Purpose Article 2 - Definitions Article 3 - General principles Article 4 - General obligations Article 5 - Equality and non-discrimination Article 6 - Women with disabilities Article 7 - Children with disabilities Article 8 - Awareness-raising Article 9 - Accessibility Article 10 - Right to life Article 11 - Situations of risk and humanitarian emergencies Article 12 - Equal recognition before the law Article 13 - Access to justice Article 14 - Liberty and security of the person Article 15 - Freedom from torture or cruel, inhuman or degrading treatment or punishment Article 16 - Freedom from exploitation, violence and abuse Article 17 - Protecting the integrity of the person Article 18 - Liberty of movement and nationality
  36. 36. Convention on the Rights of Persons with Disabilities (“CRPD”) Article 19 - Living independently and being included in the community Article 20 - Personal mobility Article 21 - Freedom of expression and opinion, and access to information Article 22 - Respect for privacy Article 23 - Respect for home and the family Article 24 - Education Article 25 - Health Article 26 - Habilitation and rehabilitation Article 27 - Work and employment Article 28 - Adequate standard of living and social protection Article 29 - Participation in political and public life Article 30 - Participation in cultural life, recreation, leisure and sport Article 31 - Statistics and data collection Article 32 - International cooperation Article 33 - National implementation and monitoring Article 34-50 various issues including procedural aspects
  37. 37. Examples of human rights breaches under EU law • Abusive and degrading treatment (Articles 2, 3 and 8 ECHR) • Malnutrition and dehydration (Articles 2, 3 and 8 ECHR) • Neglect or carelessness by health and social care services (Articles 2, 3 and 8 ECHR) • Lack of privacy in health and social care settings (Article 8 ECHR) • Lack of dignity in respect of personal care needs (Article 8 ECHR) • Inappropriate use of restraint and/or medication (Article 8 ECHR) • Problems with communication, particularly where patients have complex or profound learning disabilities (Article 8 ECHR) • Negative, patronising and infantilising attitudes towards people with learning disabilities (Article 8 ECHR) • Discriminatory treatment of adults with learning disabilities in access to • mainstream services on grounds related to their disability (Articles 2, 3, 8 and 14 EHCR) • Fear and difficulties in making complaints (Article 8 ECHR)
  38. 38. Further issues • Locked doors – what do we do about them? • Restraint • Medication - nb particular antipsychotics • Incontinence- if someone gets really distressed during help with personal care how should I intervene? • Covert surveillance - e.g. CCTV • Care home admission- Sometimes lack of community resources mean that least restrictive option is not available i.e. care home or hospital necessary because this is a restricted right and care is insufficient to meet people’s needs • Access to high quality health and social care • Non-discrimination against ‘special groups’
  39. 39. Conclusions