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Department of Health

Care Act 2014: How should local authorities deliver the care and support reforms? Please give us your views


Question 38: Does the guidance on personalisation fully support and promote a care and support system that has personalisation at its heart?

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21 comments

  1. Anonymous says:

    Whilst the guidance supports and recognises the principles and value of person centred planning throughout (suggests that disputes can be avoided through using PCP principles and genuine user involvement) it could really benefit from strengthening the use of PCP in certain points. Specifically the following areas that could be improved:

    10.5 guiding principles should to must – this will offer more consistency throughout the chapter, in particular 10.9
    10.11 – includes use of information and advice – would be worthwhile to reference local offer at this point also.
    10.17 – training for staff on mental capacity act – makes no reference to PCP training for staff or people and their families
    10.46 – would benefit from including an example of how someone lacks capacity is to be involved in their care planning but is able to give consent over who supports them if they decide not to use a family member.
    10.55 – mentions children under 18 but does not specify rights given to young people at 16 – no mention at all throughout.

  2. Anonymous says:

    The guidance does in our view promote personalisation. A specific point we would make is that the chapter on Person-Centred Care and Support Planning places considerable emphasis on people being informed about direct payments. This is entirely appropriate, as long as this is not interpreted as being the only real choice worth making. The subsequent chapter on Personal Budgets seems to provide a more balanced view. We think the guidance should make greater reference to Individual Service Funds as a positive ‘half-way house’.
    Evidence from the aforementioned personalisation report highlights a shift in culture towards more personalised services. This does not all focus on the introduction of personal budgets, but rather how services can be personalised to meet service user need.

    This case study shows how housing related support services can be personalised, and the impact of these changes:-

    Case Study – Livability

    Livability aims to it offers its clients as much choice and control as possible and asked. The service provides tailored support to meet the needs of clients with learning disabilities living in a shared supported living setting. An audit by Sitra identified the paramount things for clients in support delivery is their relationships with staff, the importance of their support and for Livability the need for client voice to be as inclusive as possible. Livability identified a number of areas where it could improve its approach to personalisation e.g.
    Pictorial tenancies to improve understanding have been developed “easy read” staff picture profile have been developed so can easily familiarise themselves with the support staff and establish areas of shared interest.
    Client representation for each area at National meeting utilising Skype meetings and arranging meeting at suitable times and location
    Improved Outcomes
    • Clients say they are pleased with the changes and feel they have been involved in the decision process
    • Clients report they are happy with their support as it is directed by simply identifying their wants and using this as a goal.
    • Clients are speaking up about how they may achieve their outcomes with a clearer understanding of future needs.
    • The implementations have given clients a greater voice and how they can increase input to promote the lives of disable people nationally, with full participation and a happy more progressive culture evidenced.

    However, concerns over funding of services mean that localities have not been able to implement their ambition. If this is an indicator of how the priority of personalisation can be impacted by financial insecurity, then this may have a greater affect across the traditional social care space. Another quote from the personalisation report carried out in 2014 shows this effectively:-

  3. Anonymous says:

    All too often the person is not the centre of their own plan because there are communication difficulties/differences. The family then step in to ‘speak for the client’ and this may well mean that in some cases the client’s wishes are never expressed. Appropriate communication should be emphasized as a right The links to external resources should include one to – talking mats, communication passports etc. should be provided and a Speech and Language Therapist or sign language, or other specialist involved as appropriate.

    Sometimes the person is not the centre of their own plan because the family members are ‘over protective’. There are a number of reasons for this that can be found in the literature. It is very important that everyone is enabled to access age appropriate opportunities. The risks attendant of these experiences are developmental risks which help the person develop new skills which lead to autonomy. Without experiencing something a person with a disability in many cases is not able to make an informed decision. Loyalty to their family of origin is in many cases very strong when the members have been the carers. However as an adult it is time to develop independence and a life of ones own. This can be very difficult for family members to support as this means safe routines now have to change. Should this be the case the Local Authority ought to be mandated to provide an advocate.

    One way of checking if the client is experiencing over protection is to ask family members who in the family the client most resembles in interests etc. Then explore the life of this family member, inorder to identify the barriers to the client achieving the same satisfactions and relevant experiences. This approach can be called exploring the culturally valued analogue.

    Essential to have regard for these issues in the guidance and to ensure that action is taken to empower the client to express their views.

  4. Anonymous says:

    Welcome a move to ensuing all carers are involved in, and receive, a support plan. Welcome also, where the person agrees, carer involvement in the care and support plans of people with care needs. Where needs are met in a care and support plan by a carer, it must be ensured that the carer is willing and able to do so, and inappropriate caring is not being undertaken by a young person. A carer’s assessment should be offered and where appropriate, a young carers assessment.
    There is currently no requirement to note whether a carer is willing or able to continue caring (or for which aspect of caring) in the carer’s own support plan. This is an important way of recording a carer’s wishes. We would recommend that this is included.
    Meaningful reviews must be carried out to ascertain whether a carer is still willing to care; currently these are often posted forms or phone calls. Clarification would be welcome.
    Carers’ support plans should be developed fully involving the carer, by a person trained in understanding carers needs and also with a sound understanding of carers rights and entitlement and also the support available for carers in the local community,
    Carers support plans are a completely new statutory requirement for local authorities. Practice guidance on how they should be implemented needs to be developed.

  5. Anonymous says:

    We welcome and support the draft guidance and regulations’ focus on people being in control of their own care and their active involvement in the planning process. We regard the draft guidance as a statement of good practice and person-centred planning which social care professionals have advocated over a number of years (Q38).
    We also welcome the approach supporting the provision of plans which are timely and proportionate, rather than focussing on timescales, and strongly support the proposition that local authorities should sign-off and assure plans.

  6. Anonymous says:

    Yes it does.

  7. Anonymous says:

    I am concerned about the personalisation which will realistically be on offer. Resources are shrinking and Councils have moved the goalposts on what services can now be accessed. In this context the ‘aspirations and wishes’ of people are unlikely to be met. While many people will take to direct payments like ducks to water there will be many others who will find it a worry and a burden to make decisions between private providers.

  8. Anonymous says:

    The guidance does but the funding doesn’t. The extent to which services can ever be truly personalised at a time of ever decreasing resources (and ever increasing service users) remains ignored and government continues to fail to appreciate the contradictions.

  9. Anonymous says:

    Partially – but there needs to be clarity if there is to be handover of care – It is important that people have a named responsible person throughout (until new arrangements are in place). Currently people can be left without a lead in times of transition

    Sounds good but it will mean a huge culture change
    There need to be clear lines of accountability – more information should be given as to how this will be enforced

    Not really – More focus/obligation is required on “whole family” assessments within health

    There is a disconnect between holistic social care assessment and more targeted health care assessments.

    it is not clear how personal budgets will be determined against pooled health and social care budgets

    Partially – Continuing healthcare needs to be reviewed – There needs to be a stronger obligation on health to ensure care pathways are in place for carers

    there needs to be reference to proper independent mediation to sort out issues that would inevitable occur between health and social care.

    Partially – although the Act does not address the fact that when people move needs may not be addressed as there maybe inequity of services depending on the area that people move to.

    Not clear about who’s responsibility it is to review maintain and update

    No – There is little reassurance that services for people with mental health needs will be available for intermediate support – usually support is withdrawn if people are stable but what’s needed is a longer period of intermediate support so as not to push people back into crisis.

    There is not much in the Act about people with mental health needs – a typically excluded group

    Continuity of care needs definition as it may not necessarily need to be one person – one lead

    It does mean that people should be freed up

    Partially
    will only work if there is a review of the law around confidentiality – more clarity is needed on what we can share how and when. Until we have that we cannot be truly integrated
    Concern that this will lead more to arguments over budgets as certain will still be ring-fenced

    Health and social care should have the conversation about budgets upfront and leave practitioners to focus on identifying need
    It is possible to have separate plans but what’s important is how health and social care work together – may not need a totally integrated plan

    Need clear policies and procedures for staff sitting behind this in order to make it happen

    We would have liked to have seen a referral pathway which is more specific – in particular around intermediate care and hospital discharge

    We would have liked to have seen more specific guidance on “how” the joint working will work

    Uses words like “should, must and attempts” – not strong enough!
    Timely review and consistency of workers will affect the proper integration of health and social care – more needs to be done to make sure these things are in place.

    Its positive that there will only be one plan – but for MH services in particular you need specialist workers to pull this together and sometimes these resources are lacking

    Where does the legal buck stop if something goes wrong?

    Integration is good but how would this work in practice as it might mean that the plan is continually updated with the number of professionals involved.

    Information sharing and confidentiality issues maybe barriers to total integration and may give rise to potential safeguarding issues
    Not sure how it will work as currently health services are free but social care is “paid for” service.

    There is transparency in the health budget but how costs are arrived at in social care is still confusing and unclear
    There isn’t much emphasis on Provider duty – an important issue when you talk about integrated assessment

    Who is the lead agency ? – this could also be voluntary or charitable sector – – this needs to be emphasised.

    Consider combining health and social care budgets – so that time is not spent arguing over costs

    In order to be truly integrated there has to be an understanding that: section 117 = free services , section 256 should be ring-fenced funding

  10. Anonymous says:

    Partially – With an emphasis on peer/community support to deliver care and support you run the risk of bias/influence from untrained people – this approach needs to be treated with caution – not sure if this would fully support a truly personalised approach.

    Glad to see carers referenced throughout – Care Act should help carers to ask how care will be delivered and call people to account
    Partially – Personal budgets don’t sit well with people living in residential care – personalisation is good – the difficulty is paying for it when you are in residential care in particular

    There should be more emphasis on linkages to voluntary and faith groups

    Partially but access to truly independent advocacy is important as SU’s and carers can have different views – the emphasis on Advocacy throughout the Act is welcomed

    More robust legislation/guidance is needed on Carers right to assessment particularly in CHC unless the law firms up on this carers will routinely get missed out from health care assessments

    Section 75 – commissioning and staff resources aren’t in place to support carers now – cant see how this is this being address through the Act?

    For Older carers there is a continuing issue of co-dependency – of the carers and cared for.

    Would like to have seen something that recognises/takes account of “mutual caring”

    Partially agree that it does – would help if Care Coordinator jobs are formalised and Government firmed up and took control in enforcing more robust referral pathways esp. around hospital discharge

    Does not take account of people with LD in residential care homes – in particular personal budgets – covering activity and/or support – usually one or the other – is this truly personalisation ?

    The spirit of the Act/way in which it is written seems to be still “top down” – there should be more emphasis on choice and control

    Not really – people with mental health needs need longevity in a relationship with their support networks – cant see anything in the Act that support that

    Partially – person centred care and support should encompass personal safety – there’s not much mention of that in the Act

    There is a positive emphasis on choice and options for people and does move in the right direction but will it translate into truly personalised solutions for people because of funding issues?

    You don’t realise you need help until sometime too late – that’s why it’s good to see Advocacy services and skilled workers to help people

    Beware using peer support for Advocacy – you run the risk of bias – to be truly effective you need independent advocacy which should be adequately resourced. – consensus

    Its positive that the care act emphasises that carers should drive how care is delivered although there is nothing that gives carers comfort that carers assessments will be carried out. – We would like to see the law firmed up on carers rights to assessment particularly within CHC

    Its positive that carers can make authorities accountable asking how care will be delivered

    Not convinced what’s written will make a difference – re- section 75 – it’s a fact that commissioning and staff resources are not in place to support carers

    Whole family assessments are good but shouldn’t be to the detriment of family member

  11. Anonymous says:

    Partially – With an emphasis on peer/community support to deliver care and support you run the risk of bias/influence from untrained people – this approach needs to be treated with caution – not sure if this would fully support a truly personalised approach.

    Glad to see carers referenced throughout – Care Act should help carers to ask how care will be delivered and call people to account

    Partially – Personal budgets don’t sit well with people living in residential care – personalisation is good – the difficulty is paying for it when you are in residential care in particular

    There should be more emphasis on linkages to voluntary and faith groups

    Partially but access to truly independent advocacy is important as SU’s and carers can have different views – the emphasis on Advocacy throughout the Act is welcomed

    More robust legislation/guidance is needed on Carers right to assessment particularly in CHC unless the law firms up on this carers will routinely get missed out from health care assessments

    Section 75 – commissioning and staff resources aren’t in place to support carers now – cant see how this is this being address through the Act?

    For Older carers there is a continuing issue of co-dependency – of the carers and cared for.

    Would like to have seen something that recognises/takes account of “mutual caring”

    Partially agree that it does – would help if Care Coordinator jobs are formalised and Government firmed up and took control in enforcing more robust referral pathways esp. around hospital discharge

    Does not take account of people with LD in residential care homes – in particular personal budgets – covering activity and/or support – usually one or the other – is this truly personalisation ?

    The spirit of the Act/way in which it is written seems to be still “top down” – there should be more emphasis on choice and control

    Not really – people with mental health needs need longevity in a relationship with their support networks – cant see anything in the Act that support that

    Partially – person centred care and support should encompass personal safety – there’s not much mention of that in the Act

  12. Anonymous says:

    Yes, the group felt that although loosely worded, the aims of personalisation are embedded within the guidance, this did give a concern that choice may in reality be “hobsons choice”, and that the guidance suggests greater variety of choice than could be available.

  13. Anonymous says:

    The guidance is clear that the person must be central to the process and involved at all stages of planning, involving carers throughout and taking into account carers’ own specific needs.

  14. Anonymous says:

    The Housing LIN is surprised to note that there is little mention of housing in the delivery of person-centred care and support planning. Whether supporting someone to ‘stay put’ in their existing home or facilitating a move to specialised accommodation, housing has a crucial role to play (see below). In this connection, please see the Housing LIN’s response to Questions 53, 55 and 71, all of which touch on this area.

    Delivering Personalised Care and Support Services in Extra Care Housing at Vernon Gardens, Brighton

    This Housing LIN case study is the summary of how a group of prospective tenants with a wide range of physical disabilities and some associated learning disabilities were helped to develop their own personalised model of care and support within a 10-flat extra care housing scheme in Brighton funded by the Department of Health and managed by The Guinness Trust, a leading housing association. It outlines some of the key moments and important milestones, and in doing so charts the opportunities presented, the challenges and anxieties tenants faced, and the difficulties they overcame to develop this model. In particular, it outlines the story of why adult social care in Brighton & Hove embarked on this journey as a part of its transformation agenda, what they hoped to achieve and how they went about the task. It also describes the aspirations they held, the strategic objectives that set the context, the relationships that needed to be developed, and the learning that has arisen.
    Link: http://www.housinglin.org.uk/pagefinder.cfm?cid=8560

  15. Anonymous says:

    Will the Act provide specific guidance to Councils on how they are to consider and act on personalisation needs in view of the diversity and equality issues becoming significant in the care process as we are a multi-cultural community across the UK. For recovery to happen quicker, cultural needs (including all the 9 protected characteristics as defined in the Equality Act 2010)must be taken into account at the outset and not considered as an after-thought. There has to be a better intergration between health and social care ensuring that service users and carers are not pushed from pillar to post before help reaches them. Accountability has to increase. Reference standards must influence and dictate the pace at which services must be delivered and operate.

  16. Anonymous says:

    Care and support plan must specify a minimum standard of care
    to be followed at service delivery, or reference standards.
    The criteria for measuring this should be part of the plan
    with monthly updates provided by the service provider
    all information available to the carer

  17. Anonymous says:

    The main/primary/sole carer needs to be far more involved in the process relating to the “personalisation”. Lip service must not be paid nor must boxes be ticked off in order to satisfy criteria. Personalisation means making the PERSON the heart of the issue, and not viewing them as one of many.

  18. Anonymous says:

    For some people, detailed support plans are very important and should be co-produced with expertise, care and attention.
    But many disabled people are as competent as the general population to manage their lives – some considerably more so – and it is a denial of basic citizen equality when systems of care provision insist they plan their intimate day-to-day life choices with other people before their support entitlement is released.
    For such people, support plans should be little more than a sentence identifying the disability barriers that the support is intended to remove, and agreeing that willing recipients will use direct payments to meet their care needs as they judge fit.

  19. Anonymous says:

    Whilst thought has clearly been given to use of the words ‘should’ and ‘must’ I am concerned that ‘should’ is used too frequently and in instances where it could give too much leeway to a local authority to NOT do something that the act intends.
    Where ‘should’ is used there possibly needs to be some further descriptor to clarify when something WILL be done and when it is acceptable for it not to be done.

    • Anonymous says:

      an excellent point the local council does take and use any opportunity it can to not do something when that option is made available to them

  20. Anonymous says:

    Could this be more visionary and give force to the empowerment of the service user through supported self assessment and the overall choice and control principle. It is in there but we don’t want this to be discretionary or voluntary if we believe that this is the way to improve services and achieve choice and control, not just a ‘good to do’.