"1st Draft � 10 November 2003"
11 November 2003 Hilary Cayton Choice, Responsiveness and Equity Department of Health Richmond House 79 Whitehall London SW1A 2NS Dear Hilary Cayton, Please find attached Nacro’s response to ‘Choice, responsiveness and equity in the NHS and social care’. We think that this is a very important consultation. As one of the very few organisations likely to raise important issues about mentally disordered offenders (MDOs) we have tried to make some practical and constructive suggestions. However, we are concerned about the nature of this consultation process. While the consultation process was launched on 1 August 2003 – during the period when many people are away on holiday - the document was only available on the Department of Health website during October with a closing date of 11 November for written submissions. Although from launch date to feedback might meet the Cabinet Office’s Code of Practice to allow for a period of twelve weeks, the reality will be that many people who might have wished to comment will not have had the opportunity to do so. Please contact me at the above address if you wish to discuss any aspect of our submissions. Yours sincerely, Dave Spurgeon Policy Development Manager Choice, responsiveness and equity in the NHS and social care A national consultation; Autumn 2003 Nacro welcomes the opportunity to comment on ‘Choice, responsiveness and equity in the NHS and social care’. We believe that choice should be a fundamental component in the delivery of all health and social care. Nacro’s Mental Health Unit has been working specifically on issues to do with mentally disordered offenders since 1990 and has developed an understanding of the needs of this client group and the way in which they wish to be consulted. The Unit was also commissioned to conduct a survey on the needs and choices of a group of service users being considered for a long-stay medium secure unit. While Nacro will be concentrating on mental health and answering the questions posed from the perspective of its work on and with mentally disordered offenders, we believe that many of these answers apply equally to all people with mental health problems and to many of the other themes. Nacro welcomes the assumption in the document that, having a mental health problem, is not a barrier to making choices. People who are may be very distressed can – and often do – retain the capacity to understand quite a lot of what is happening to them. Therefore, the presumption must be that, unless it can be shown that the person lacks capacity at that time based on an assessment by more than one person, they should be offered the same choices as any other service user. Clearly, a number of mentally disordered offenders access health and social care services via the criminal justice system or through the compulsory sections of the Mental Health Act 1983. However, the element of coercion involved – either explicit or implicit - should not mean that such service users are not offered choice. Indeed, there may be an argument that choice is even more important to this group if they are to engage effectively with services. Nor do we believe that choice should be dependent upon resources. Clearly, there will be occasions when choice is restricted or rationed due to a lack of resources but the starting point must be that choice should be as wide as possible and meets the different needs of all groups and individuals. Unless sufficient and varied resources are available then choice will always be cosmetic and not meaningful. We are concerned that, for many service users, the lack of resources – be it beds or an appropriate service – means that they do not receive a suitable service. For example, for many mentally disordered offenders the choice might be being placed in the lowest level of security, being located close to home etc. Unless there are both adequate resources and a range of services then for many service users the question of choice does not arise and is meaningless. This point has been supported by the recent report from the Sainsbury Centre for Mental Health which showed that many Primary Care Trusts (PCTs) have diverted much needed 1 money for mental health to other services. In these cases, no resources means no choice. As well as a need for a parity in services across geographical areas and boundaries to allow people the same sorts of choices no matter where they live, there should be parity across and within facilities. Nacro welcomes the proposed changes to prison health care, which will allow prisoners equal access to the same range of services that people in the community enjoy. We also welcome the establishment of Prison In- Reach teams and believe that prisoners with mental health problems should also have choice in the types of treatments and care they are offered as well as being able to access services on their release. However, there will also be occasions when choice does not require new resources but different and innovative ways of using or allocating existing ones. For example, moving to a system that allows service users choice about their appointment time rather than just being given one is more about a culture change than any provision of new resources. Choice is also about inclusion. Service users should not be denied access to a choice of services purely on the grounds of their diagnosis or behaviour. For example, many service users with a diagnosis of personality disorder or substance misuse are very often not offered a full choice of access to services. Choice should reflect the particular needs of different groups. In particular, choice should meet the specific needs of women and black and minority ethnic service users with a match in resources that are both specific for and sensitive to their needs. This is not simply about providing black staff for black service users but about recognising that this might be a need, that black service users are offered a choice, and that access where it is requested is facilitated. There will also be occasions when service users will wish to ‘opt-out’ of making a choice or make no choice at all. When service users are in distress they may wish for carers, friends or advocates to act on their behalf. Services should actively work with service users so that these choices are known in advance (these choices might be reflected in the Care Plan for example) and/or actively promote and engage with the user such mechanisms as Crisis Cards. Finally, this is not only about providing a better service for service users. Service users with a dual diagnosis of mental health problem and substance misuse are likely to be assessed and seen in two different locations. Not only might this be inconvenient for the service users it splits the care and treatment they receive. By allowing choice in having just one location, the service user is more likely to engage with services and it will be easier for both services involved in the care to interact and communicate. Therefore, by allowing choice also means an improvement in service provision. What choices do patients/users/carers want? Service users want to feel empowered and they can achieve this by having choice in all aspects of their care. They especially want choice about their care co-ordinator or key worker and especially the gender of that person. They also want choice about their Responsible Medical Officer (RMO) although, in one survey we undertook, this was not as high as the choice about their care co-ordinator. 2 They require choice about the type of care and services they are offered and where these are offered. They want these to be close to family and friends and within a pleasant, natural environment with pastoral views. Women want the choice of women-only spaces and single sex accommodation. Additionally they do not want to be in the position where they are the only woman on a medium secure unit. Choice about the place of assessment should also be considered. Some service users might want that to take place in an environment that is familiar, others might wish for somewhere that is less personal and neutral. Service users want to feel safe and secure. For this to happen they needed to be able to interact with staff and many want staff who are slightly older and more experienced. All service users want a choice about the type(s) of treatment they are offered. They want this to be inclusive, more holistic and with access to ‘talking treatments’ as well as a range of other therapies. With regard to medication they want this only to be given when it is necessary and to be involved in a discussion about what medication and the dosages. Where care and treatment takes place in a mental health unit, service users require a choice about their day and to be involved in the planning of their week. They require this to be flexible and not rigid. They want a constructive regime with access to meaningful and stimulating activities. They want to be able to influence how the unit is run and to be consulted on changes and what rules should be applied. They would like the opportunity to work and for this work to be paid. Many want the opportunity to cook their own meals as well as being able to access a canteen. Where care and treatment takes place in the community, service users want access to a range of community facilities. They want choice about which facilities they access and choice about when they see their care co-ordinator and where that occurs. What information and support would patients/users/carers need to exercise these choices? Service users require access to clear and accurate information about rights and choices. In order to access this they may require the support of independent advocates over and above the ‘protection’ role that an Approved Social Workers (ASW) and the role of an appropriate adult has. They need information about the types of treatments that are available and, in particular, about their potential benefits, risks, and possible side-effects. They need to know what each treatment involves to make any choice as full and meaningful as possible. This is especially true if they are to be offered medication and would need to understand the different ways medication may be administered to allow for a full choice. Users require information about the Mental Health Act 1983 and the compulsory process. For example, what it means and the differences between being an informal or a formal patient. They need to know their rights and how to access these. They may require access to advocates and/or legal advice to facilitate this understanding. In order to exercise choice meaningfully, the method of consultation must be as wide and open as possible. The process must not be constrained by a lack of resources or 3 a lack of will by the people involved. Information must be made available in a variety of ways and in different languages. Feedback should be given once any consultation process is completed or choice made showing why this [choice] is or is not possible. What changes in the system, or how people work, or communicate would be needed to create these choices and make health and social care more responsive? There needs to be wider availability of different types of services as well as adequate resources to ensure that options are not restricted. Choice must be real and about things that really matter to service users not just cosmetic and on aspects of their care and treatment, which is peripheral. They should be consulted before the process and developments start and not after them when their choices are limited. For example, we know of a consultation process, which was about the care within a new-built unit but which happened after the unit was completed. Therefore, the consultation was restricted by limits imposed by the design when many service users wanted to comment on the design itself. For choice to be real, there needs to be a culture change where consultation and choice is inclusive and seen as the norm rather than the exception. Where service users and carers are involved in the consultation process they must be as equals where their voice is heard and not as a token gesture. Consultation and choice must be on-going and not time-limited or a one-off exercise. The choice someone makes today should not be seen either as everlasting or as the only choice they have. Rather, choice should be part of dynamic process which can increase as a person’s health improves allowing more options to be open to them. How could these changes be made fair to all? Choice and consultation needs to be both fair and open to all. We are aware that some units consult through Patients’ Councils. While this may be a valuable mechanism, we are aware that some may be dominated by one or more service user with their own agenda. Therefore, we would welcome a variety of methods to consult including: questionnaires; surveys; face-to-face discussions; and, the use of outside bodies. Nor should anyone be ‘punished’ for making a choice that is seen as ‘unacceptable’. For example, if someone is offered an appointment that is not convenient and chooses to decline they should not be refused another appointment or given one that is considerably delayed. Rather, choice, in this example, should be about offering a number of dates and allowing the person to choose the one that is most suitable for them. 4