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Personal budgets for dementia. What’s the harm in them, and are the right people benefiting?
Personal budgets held by individual people might allow more flexibility in choice and control over health services. So what’s the harm in them?
Barry Schwartz’s famous book “The paradox of choice”, summarising a lot of other evidence, contests the assumption that maximising collective welfare of citizens is achieved through maximising individual freedom.
On May 8th 2015, there’ll be a change in government in the UK (unless the arithmetic happens to throw up another Conservative-Liberal Democrat coalition, which is quite unlikely). It is likely that all the major political parties will wish to implement a form of ‘integrated’ or ‘whole person care’, with the merging of health and social care. It is a moot point how early on people, if at all, will be offered the chance of a ‘unified personal budget’.
A particular group of people for whom personal budgets may be considered are persons with dementia. It is therefore perhaps a bit disappointing that some of the same issues which existed many years ago are still lurking in some form even now. No matter how much effort you put into ‘compassion’ or ‘Dementia Friends’, the care system is never going to be acceptable in the light of dangerous financial cuts to social care. The “one size fits all” philosophy seems to be pervasive in the Government approach to personal health budgets, whichever Government pursues it. It’s as if it doesn’t matter who is the singer is because the song is the same: like Pharrell’s “Happy” was originally recorded by Cee Lo Green (allegedly).
Certain people with early dementia might be particularly prone to impulsive or risk-taking behaviour, so there is a reasonable question whether some persons with dementia – despite full legal capacity – are “safe” to have personal health budgets themselves. But this I feel strengthens my argument for a proper system of delivery of personal health budgets, not undermining them. When personal budgets work for dementia, as explained by Colin Royle here, they work very well.
A potential danger is that somebody is given a list of ‘options’ for care support planning, and effectively told to get on with it. It can be difficult to get to the precise details of resource allocation systems, and, without knowing such details, it is difficult to ascertain whether they legally constitute a process acting to the detriment of the group of people with dementia. This leaves individual local authorities open to an accusation of indirect discrimination, offending the Equality Act (2010). There are various sources of factors which might cumulatively cause certain people to be more disadvantaged than others: e.g. an ability to ‘self-assess’ one’s needs in a questionnaire (with age being a confounding factor).
Personal budgets might be offered in a number of ways: namely those which were directly commissioned and managed by the local authority, third party managed accounts, direct payments or a mixture of these things. Concerns might come from all sorts of quarters: such as actual budget holders who don’t feel that the resources allocated meet their needs, or the professions who don’t feel that certain candidates are suitable in the first place. This is perhaps one of those uncommon instances where ‘cutting out the middle man’ is in fact a dangerous idea. The actual calculation of resource allocation for an individual candidate is emphasised rather than the calculation of running the whole system adequately, in much the same way that the improvement in wellbeing in a personal budget might accrue from having a choice at all rather than the actual proposed care intervention.
Take, for example, this passage:
“Quality support planning needs the investment of time. In the ideal world, presented by those who ‘run with’ the agenda, everyone is able to take an active part in making decisions for themselves and choosing their own care to meet their needs, as defined by themselves. The reality is that some groups have not been able to engage in the process of taking an active role in their own support planning; they are effectively excluded. This may be because they lack the capacity to manage a direct payment or organise a personal budget themselves, or because they lack support systems around them, such as family to help them do this.”
Clearly not everyone has benefited from the “Prime Minister’s Dementia Challenge”. For example, the Dementia Advocacy Network went bust at the end of last year. And yet this is precisely the time when people with dementia, and caregivers, need emotional support, and need to be safeguarded against forms of abuse including financial and legal. It appears that people who have benefited most from personalisation are those with the best advocacy and loudest voices. Even with the most-straightforward appearance of self-assessment application procedures for personal budgets might require an enormous amount of professional support. There are various reasons why persons with dementia might have special obstacles in their uptake of personal budgets, as articulated well by the Mental Health Foundation: two for example include a residual stigma and discrimination against such citizens, and also the fact that some citizens might not have a reliable correct diagnosis in the first place.
Self-directed support (SDS) has as its central feature a personal budget arrived at through an ‘up-front’ allocation of money; though up front allocation to give people power is one element of SDS amongst others and therefore it would be unfair to generalise across all the resource allocation systems techniques. It was introduced as formal policy in 2008, with an original target that all service users should have a personal budget for social care by 2011. In a recent helpful article, “Personalization of health care in England: have the wrong lessons been drawn from the personal health budget pilots?“, various well-known methodological problems with the original pilots are considered. The authors do, however, propose an extremely constructive way of moving forward, what they call “flexibility through partnership”.
Cheekily, the authors observe:
“As Gadsby points out ‘It seems that in many cases, additional resources[in the PHB group] were provided that enabled individuals to pay for extra services or one-off goods. It is perhaps unsurprising, therefore, that overall improvements were found in wellbeing amongst budget holders’”.
Without advocacy services, then, we really do run the danger of running a two tier service, and this is extremely dangerous, aside from the swathe of legal aid cuts. For a government which prides itself on parity, particularly for empowering new private providers to enter a liberalised market, any proposed system of personal budgets will require the same quality and opportunity for flexibility to all user groups including those who have no recourse to advocacy. A strengthened social care system would go a long way here. Nobody has a single right answer for personal budgets in dementia so it might not be able to have the exclusive kite mark to match. It’s clear whilst there might be excellent ways of implementing them, there are plenty of bad ways too.
Unfortunately, time is running out a bit, and political leadership and adequate funding – including for advocacy services – are now both essential. And who will benefit? If they work well, they will shift power to the people able to make ‘correct decisions’ in care, but I feel that the whole system has to be fit-for-purpose not the budget mechanism itself. That’s where the State comes in. Who the correct advocates are, as they might not necessarily be carers including unpaid caregivers (though they might be.) Ultimately, the most offensive irony would be to make the tool that offers choice and control compulsory, but this could be expected from politicians who like to give an illusion of choice.
There are still deeply engrained issues about whether people will have enough money to meet their needs. It might be easier to hide downsizing of budgets if they’re called a yet further new name. There are obviously huge problems with merging one universal system intended to be comprehensive and free at the point of need with one which is not and means-tested; and this would not necessarily benefit the person with dementia. And at worst, the wrong type of broker, not professional advocates including social workers, could be profiting but not providing overall benefit. Introducing any transactions into a system absorbs resources, however you attempt it.
We now have to be very careful with resolution of this potentially useful policy plank – otherwise it might be a case of ‘You’ll do’, rather than ‘I do’.
I won my disability living allowance appeal and it surprisingly was an incredibly rewarding experience
This is what you would call perhaps a ‘good news story’ about my disability benefits.
Last Monday, I was invited to Fox Court, Gray’s Inn Road, to go in front of a disability benefits tribunal. I had no idea what to expect. If you ‘Google’ what these tribunals are about, you are likely to draw a blank.
I turned up on time, although I was very nearly late. I think it’s worth treating the tribunal appointment like a job interview. Make sure you turn up with time to spare, so you can compose your thoughts. Where it isn’t like a job interview is that I appeared ‘smart casual’. This is because I have real difficulty in doing buttons and tying shoelaces, and I felt it might be appropriate for the tribunal members to see me how I actually am in my day-to-day life.
Actually, they were very nice to me. I had a panel of three, including a disability expert, and a medical expert. They weren’t overly friendly. There was a huge timer between us, so I know that the entire thing was over in 17 minutes flat.
In the end, it was quite a big deal for me. For me, I had put in an application, and then was not awarded any benefit. I had been on the highest rate of mobility allowance before. I took just in case my old medical notes, but did make it crystal clear to them the date of the reports. They found them useful. I asked for my original submissions to be reviewed, and they made an initial award. I discussed this award with a welfare benefits advisor in a law centre whom I know well. He recommended that it was, in fact, the wrong award, and thought I should appeal. The only voluminous paperwork was the original application form, which you must complete to the best of your ability. The point about the appeal notification is just to let them know you wish to appeal, with a clear reason.
I didn’t have to pay for the appeal. Always tell the truth. Also, only answer the question they ask. Don’t pontificate about anything else. They want to know how far you can walk in metres. They also want to know whether you need help with your living, so think carefully about washing, bathing, shaving, cooking, shopping, getting out of bed, showering, etc. If something doesn’t apply to you, e.g. night-time care, don’t shoehorn possible reasons why it might.
Think about what you’re saying. Make sure that what you’re saying is consistent all the way through. This will be a given if you are telling the truth. But if you say you never go out of the house don’t say you’ve just come back from a hill climbing trek in the Himalayas, etc. This is obviously a ridiculous example, but you know what you mean.
I learnt some basics from the advocacy course in my Legal Practice Course which helped. That is, it really helps if you keep eye contact with the people asking you the questions. I acknowedged that I had a weird squint beforehand, as I have a rare double vision problem. I didn’t use any notes, but I would strongly recommend that you don’t immerse your nose in a bulk of notes. Those notes will only confuse you, and slow you down enormously.
So, anyway it was an entirely constructive experience. Whether or not it is typical, I don’t know. However, I learnt how to trust them. I didn’t take in any tape recorders, as indeed some had advised. I won my appeal. I’m glad I put myself through it, though it can be exasperating and time-consuming as it goes along. As it happens, all the people I spoke to in the Department of Work and Pensions were extremely helpful, but this again could be simply “luck of the draw”. Good luck!
Preface to my book: “Living well with dementia: where the person meets the environment”
Volumetric MRI dementia
Introduction
According to the Department of Health’s “Improving care for people with dementia” (2013), there are around 800,000 people with dementia in the UK, and the disease costs the economy £23 billion a year. By 2040, the number of people affected is expected to double – and the costs are likely to treble. There is no doubt therefore about the scale of the problem, and it needs the finest minds in showing leadership on how to enable individuals with dementia to live better, and indeed live well. The Prime Minister’s Challenge on dementia (“Challenge”) (2012) set out a renewed ambition to go further and faster, building on progress made through the National Dementia Strategy, so that people with dementia, their carers and families get the services and support they need. This Challenge wished to address in particular certain issues, such as the observation that the number of people with dementia is increasing, that currently the diagnosis rates are thought to be low, and there is sadly a lack of awareness and skills needed to support people with dementia and their carers. Whilst it is possibly difficult to find a ‘miracle cure’ for dementia, it is a reasonable aspiration for individuals with dementia (and their immediates) to have as best a quality-of-life as possible, and it is not necessarily the case that subtle but significant improvements in quality-of-life will “cost the earth”.
It is intended that this book should not just of interest in the UK, as the problems in healthcare are relevant to all jurisdictions. Thinking about how society should respond does pose some jurisdiction-specific issues; for example, this book refers to legislation in the UK such as the Equality Act (2010) or the Mental Capacity Act (2005), or regulations in health and safety relevant to building design in the UK. However, a consideration of the global issues in public health leads one quickly to appreciate the complexity of the economic case for improving wellbeing in individuals in dementia and their immediates, and that there are many people who are genuinely interested. Whilst indeed there has been a lead through the Prime Minister’s Dementia Challenge (2012), it is clear that previous administrations in England have latterly decided to prioritise dementia as a public health priority (for example, the National Dementia Strategy, “Living well with dementia” (2009)).
The ‘ecosystem’ of interested parties is large, and it is striking that there are so many passionate ‘#dementiachallengers’ on Twitter daily for example who are always a source of contemporary information, enthusiasm and innovation. There are currently huge advances being made in research and policy, and it is only possible through dementia communities ‘working together’ to keep abreast of them all. For that reason, this book has necessarily had to include electronic references, and I have tried to maintain links as correct as up-to-date at the time of publication. However, please feel free to look for any related information anywhere, and please do not use this book as an authoritative source of information to rely on necessarily. This book is intended simply as an introduction to a vibrant field, and certainly please be guided by healthcare professionals regarding individual care. The text of this book provides general principles, which I hope you might find interesting.
NICE quality standard 30 on ‘supporting people to live well with dementia’
In April 2013, NICE published its quality standard 30 on ‘supporting people to live well with dementia’. This quality standard was intended to cover the care and support of people with dementia. It applies to all social care settings and services working with and caring for people with dementia.
NICE quality standards are supposed to describe high-priority areas for quality improvement in a defined care or service area. Each standard consists of a prioritised set of specific, concise and measurable statements. NICE quality standards draw on existing guidance, which provide an underpinning, comprehensive set of recommendations, and are designed to support the measurement of improvement.
The areas covered in this ‘quality standard’ includes:
Statement 1. People worried about possible dementia in themselves or someone they know can discuss their concerns, and the options of seeking a diagnosis, with someone with knowledge and expertise.
Statement 2. People with dementia, with the involvement of their carers, have choice and control in decisions affecting their care and support.
Statement 3. People with dementia participate, with the involvement of their carers, in a review of their needs and preferences when their circumstances change
Statement 4. People with dementia are enabled, with the involvement of their carers, to take part in leisure activities during their day based on individual interest and choice.
Statement 5. People with dementia are enabled, with the involvement of their carers, to maintain and develop relationships.
Statement 6. People with dementia are enabled, with the involvement of their carers, to access services that help maintain their physical and mental health and wellbeing.
Statement 7. People with dementia live in housing that meets their specific needs.
Statement 8. People with dementia have opportunities, with the involvement of their carers, to participate in and influence the design, planning, evaluation and delivery of services.
Statement 9. People with dementia are enabled, with the involvement of their carers, to access independent advocacy services.
Statement 10. People with dementia are enabled, with the involvement of their carers, to maintain and develop their involvement in and contribution to their community.
Overview
The aim of this book was not to provide a prescriptive text for this quality standard. I hope the book will be useful for a ‘diverse audience’, in other words anyone interested in the diagnosis, investigation or management of dementia, with especial emphasis on improving wellbeing; such interested people might particularly include the general public, psychologists, innovation specialists,, psychiatrists, neurologists, geriatricians, general medical physicians, nurses, public health physicians, medical students, engineers, economists, psychologists, commissioners and hospital managers. It is therefore extremely hard to find all this information ‘in one place’, and it is hoped that this book will help to provide a much needed overview and to build bridges between different ‘silos’ of thinking.
The approach of the National Dementia Strategy: Living well with dementia (from the Department of Health) (2009) devotes the whole of its chapter 5 to the issue of living well with dementia. In the preceding chapter to this Strategy, chapter 4on ‘early diagnosis’, the approach described is obviously inclusive:
“From our consultation, and based on a successful DH pilot and the DH cost- effectiveness case, it appears that new specialist services need to be commissioned to deliver good-quality early diagnosis and intervention. Such services would need to provide a simple single focus for referrals from primary care, and would work locally to stimulate understanding of dementia and referrals to the service. They would provide an inclusive service, working for people of all ages and from all ethnic backgrounds.”
A ‘timely diagnosis’ is only of benefit, it is felt if there is a ‘useful’ intervention in dementia: this is described in chapter 4 has having three essential components: making the diagnosis well, breaking the news of the diagnosis well to the individual with dementia and their immediates, and providing directly appropriate treatment, information, care and support for such individuals. This timely book is part of a drive to dispel the notion that ‘nothing can be done’ in the context of management of dementia, even if current pharmacological therapies might have limited efficacy. The book is an overview of the field, describing what ‘wellbeing’ actually means, and why it is important in the context of national policy. The book quickly establishes the importance of the ‘person’ in discussing dementia care, including independence, leisure and other activities, and, in the final stages, end-of-life care, which is a discussion which should not be avoided. No individual with dementia should be abandoned in relation to his or her environment, and indeed there is much evidence to support the idea that the environment can be optimised to improve the wellbeing of an individual with dementia and his/her immediates. Considerations include home and ward design, the use of assistive technologies and telecare, and the ‘built environment’. A constructive interaction of an individual with his or her environment is clearly vital, and this includes understanding communication issues, how to champion the rights of an individual living well with dementia through independent advocacy, and the way in which ‘dementia friendly communities’ can be supported.
Contents
- Introduction
- What is “living well with dementia”?
- Measuring living well with dementia
- Socio-economic arguments for promoting living well with dementia
- A public health perspective on living well in dementia, and the debate over screening
- The relevance of the person for living well with dementia
- Leisure activities and living well with dementia
- Maintaining wellbeing in end-of-life care for living well with dementia
- Living well with specific types of dementia: a cognitive neurology perspective
- General activities which encourage wellbeing.
- Decision-making and an introduction to advocacy in living well with dementia
- Communication and living well with dementia
- Home and ward design to promote living well with dementia
- Assistive technology and living well with dementia
- Ambient-assisted living well with dementia
- The importance of built environments for living well with dementia
- Dementia-friendly communities and living well with dementia
- Conclusion
Chapter synopses
It is possible to read each chapter in this book independently, and indeed each chapter is independently referenced.
Chapter 2 is an introduction to the whole book. Introduces the concept of what is like to ‘live well with dementia’. Investigating wellbeing has broadened the scope of previously overly narrow approaches to healthcare, in measuring outcomes. This chapter also introduces the idea that it is grossly unfair to consider ‘dementia’ as an unitary diagnosis, as in fact the term is a portmanteau of hundreds of different conditions at least. There has been a growing trend that ‘dementia’ and ‘memory problems’ are entirely synonymous, and this has added unnecessary noise to the debate. Dementia care is currently done in a number of different settings, and assisted living may be of increasing relevance in a drive to encourage individuals to live well independently with dementia.
Chapter 3 presents the formidable challenges of how ‘living well’ might be measured in general. There are issues about how quality of life measures change as a dementia progresses, what the relationship might be between wellbeing and physical health, and how wellbeing in dementia should be measured accurately at all.
Chapter 4 looks at the current socio-economic arguments for promoting a wellbeing approach in dementia. There are a number of converging cases for considering wellbeing, such as the economic case, the ethical case and a case based on social equality. While resources are limited, serious considerations have to be made as to which interventions are truly cost-effective, including of course the assistive technologies.
Chapter 5 presents the background for dementia as a public health issue in the UK. There is also a very active debate as to whether one should ‘screen’ for dementia. A core aim of the National Dementia Strategy (1999) is therefore to ensure that effective services for early diagnosis and intervention are available for all on a nationwide basis. It is argued, in this Strategy, that “the evidence available also points strongly to the value of early diagnosis and intervention to improve quality of life and to delay or prevent unnecessary admissions into care homes.”
Chapter 6 considers how and why being a ‘person’ has become so central to living well with dementia in academic and practitioner circles. In a way, the approach of ‘person-centred care’ is a historic one, but it has been a consistent strand of English health policy developing into contemporaneous views of integrated and whole-person care. This chapter also introduces ‘personhood’, and the approach of ‘dementia care approach’.
Chapter 7 addresses the specific rôle of leisure activities for an individual with dementia. Leisure activities are generally considered for many to be beneficial for the mental and physical wellbeing of individuals with dementia, and there are specific problems to be addressed such as the reported levels of relative inactivity in care homes.
Chapter 8 details how wellbeing is relevant also to end-of-life in dementia. This chapter considers the importance of support for carers, for the wellbeing of individuals with dementia and their carers. This chapter considers where optimal care could be given for individuals with dementia, the contribution of medication, but how it is vital to address specific issues in advanced dementia which have a direct impact on wellbeing (such as pain control).
Chapter 9 identifies that it is in fact it is impossible to consider dementia as a unitary diagnosis, and that specific forms of dementia can present their own formidable demands and issues. This chapter considers in detail how and why memory problems can be a presenting feature of dementia of the Alzheimer type, and the implications for interventions in wayfinding which could rationally improve wellbeing in such patients. The chapter also includes recent elegant work about the neural networks which are hypothesised to be important in behavioural variant frontotemporal dementia, and how this “social context network model” fundamentally affects our notion of wellbeing in such individuals.
Chapter 10 introduces ‘general activities which encourage wellbeing’, in a first chapter on the possibility of “assistive technologies” in enabling individuals with dementia to live well. Certain memories can be particularly potent in the dementia of the Alzheimer Type, and, whilst the ‘jury is possibly out’ on the validity of reminiscence therapy, the chapter discusses the possible benefits of the CIRCA project on the wellbeing of individuals with dementia. Other activities are also considered; how they may help wellbeing, such as dancing, exercise, and music.
Chapter 11 takes up an important theme in living well with dementia; that is empowering the invididual to make decisions, the law relating to capacity, and how independent advocacy services have a beneficial rôle to play. Independent dementia advocacy is a critical area of a statement in NICE QS30, and this chapter reviews types of advocacy (and its relevance to wellbeing and person-centred care), the current mental capacity legislation, and the crucial importance of diversity and equality in policy.
Chapter 12 explains why good communication is so crucial in the setting of individuals living well with, but not simply restricted to healthcare professionals. This not only appears to be in terms of providing information about the condition locally, but also face-to-face communication with people living well with dementia. This chapter looks in detail at both verbal and non-verbal methods of communication, with a view to raising awareness of their impact on living well with dementia.
Chapter 13 analyses the importance of home and ward design for improving wellbeing in dementia. ‘Therapeutic design’ is a central philosophy of good design, and this chapter has as its focus a number of different setting. General principles are described as how to wellbeing can be improved through careful design of certain parts of the house (such as balconies, bathrooms, bedrooms, living rooms and dining rooms), and considers the neuroscience of sensory considerations at play (for example in lighting and vision, and sound and hearing.)
Chapter 14 is the first of two chapters on ‘assistive technologies’ in dementia, providing an overview of this important area for living well with dementia. This chapter explains what ‘assistive technology’ is, what its potential limitations are, the INDEPENDENT project, the importance of “telehealth” (and important ethical considerations), and the design of ‘smart homes’.
Chapter 15 is the second of two chapters on ‘assistive technologies’ in dementia, looking specifically at an approach called ‘ambient-assisted living’ (AAL). The rationale behind the use of AAL in improving wellbeing is explained, as well as the general issue of how to encourage adoption of innovations in an older population. Detailed examples of specific AAL projects in improving wellbeing are described including SOPRANO, COACH and NOCTURNAL.
Chapter 16 introduces the general emphasis on the ‘built environment’ setting, and how inclusivity still drives this area of work in living well with dementia. Ageing presents its own challenges including opportunities and threats, but this chapter focuses on the remarkable initiatives which have recently taken place in improving the outside environment for individuals with dementia. The chapter details the I’DGO project, and highlights the especial importance of inclusive design for furthering wellbeing in dementia outside environments.
Chapter 17 considers how an individual with dementia lives as part of the rest of a community and society, and policy initiatives which have sought to address this. The discussion is unexpectedly problematic about a need to define what a ‘community’ might be, but the chapter includes domestic and international approaches to the ‘dementia-friendly community’, including the RSA’s “Connected Communities” and WHO’s “age-friendly communities” initiatives. As a central policy plank which is thought to be critical for developing wellbeing in individuals with dementia and their immediates, this chapter considers why dementia-friendly communities are worth encouraging at all, why there is a societal need to involve individuals with dementia in their communities, what aspects individuals with dementia wish from such communities (including the “Four Cornerstones” model), and the benefits of “resilient communities”.
Further information
You are advised to look at specialty websites which are devoted to all the dementias (such as medical charities), which often have useful information factsheets and booklets. Also, the Department of Health and their ‘Dementia Challenge’ website is an impressive source of information. You are also advised to consult https://www.evidence.nhs.uk which has access to a number of useful contemporaneous clinical evidence sources. Online medical journals are also an excellent source of peer-reviewed research, such as the BMJ, the Lancet, and the New England Journal of Medicine.
Looking to the future
There are, of course, no “right answers” to many issues, and a wise person is a person who knows where to find relevant information. However, the sense of optimism and goodwill is a genuine one in UK health policy, regarding dementia. Whilst there will often be difficult debates regarding dementia such as “How willing should a GP be to make a diagnosis of dementia when a patient has only gone to see his GP because of a sore throat?” or “Should we look to research a drug which can immunise people against dementia?”, the fact there are so many bright people in the UK working in areas relating to dementia is a real credit to English health policy as it faces formidable challenges of its own.
References
Department of Health (2009). Living well with dementia: A National Dementia Strategy: Putting people first. London: Her Majesty’s Stationery Office. Available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/168221/dh_094052.pdf.
Department of Health (2013) The Dementia Challenge. London: Her Majesty’s Stationery Office. Available at: http://dementiachallenge.dh.gov.uk
Department of Health (2013) Improving care for people with dementia. London: Her Majesty’s Stationery Office. Available at: https://www.gov.uk/government/policies/improving-care-for-people-with-dementia
Department of Health (2012) The Prime Minister’s “Dementia Challenge”: Delivering major improvements in dementia care and research by 2015. London: Her Majesty’s Stationery Office. Available at: https://www.gov.uk/government/policies/improving-care-for-people-with-dementia
National Institute for Clinical Excellence (2013). Supporting people to live well with dementia (QS30). Available at: http://guidance.nice.org.uk/QS30.
UK government. Mental Capacity Act (2005) http://www.legislation.gov.uk/ukpga/2005/9/contents
