Part 1: People and Places
Starting off the recommendations for the future of residential care with a focus on people is no coincidence. Formulating policies, planning care services and designing new care settings should all start with the service user's perspective in mind.
Discussions about placing the needs and wants of the individual at the centre of what we do will invariably hear the phrases 'Personalisation' and 'Person-centred care' being used, dependent on whether the speaker is from a health background or a social care background. For the purposes of this paper, we are using the term 'Personalisation' to indicate that it is the full package of accommodation, hotel, and leisure and recreation that needs to be shaped round the individual, as opposed to the actual direct care activities.
A personalised approach needs to be embedded in how we deliver care for Scotland's older population if we want to truly talk about caring for people, as opposed to delivering care to them. We should also include the increasing number of unpaid carers who make considerable sacrifices to care for a family member or close friend. Seeing them as equal partners in care will help extend the reach of the personalisation agenda.
Of course, finances will determine the extent to which we can deliver a truly personalised care service, yet there are principles that can be embedded and policies that can be implemented either without additional cost or at relatively low cost with far-reaching impact.
In planning for the future of residential care, the personalisation agenda cannot be separated from any discussions about the physical environments we would like to deliver care within. There is inevitably a close connection between the environment a care service is delivered in, and the people who deliver the service - the workforce. For the purposes of this report however, we have set out Personalisation at the front and by itself to emphasise the fact that this needs to be at the forefront of our thinking.
Policy and Legislative context
There has been much progress in bringing a more person-centred approach to health and social care services in recent years. Within an NHS context, new standards in patient safety and patients' rights have been introduced, alongside on-going person-centred work associated with the NHS Quality Strategy.
Local government and social care providers in the third and independent sectors have likewise been on a similar journey for some time. Personalisation is about empowerment, it is about rebalancing power relationships, and it is about co-producing solutions that allow individuals to improve their lives. And importantly, it has to be available to all.
This work has recently developed a focus around Self-Directed Support (SDS), with the 2013 Act enshrining the right of the individual with eligible support needs to exercise control over their support. Self-directed Support (SDS) is an approach designed to bring about independence and choice for people with care or support needs. It involves identifying a budget for an individual's support and puts them in control of how that budget is invested to meet agreed outcomes. This can be provided via a 'real budget' (a direct payment to the individual in place of services) or a 'notional budget' where an individual fund where the person takes on-going control over their support.
The Social Care (Self Directed Support) (Scotland) Act was passed by the Scottish Parliament in November 2012 and is expected to come in to force on 1st April 2014. Following the bill's passage, the Scottish Government published draft regulations and guidance for consultation in spring of 2013.
The Act sets out four general options for individuals to exercise control over their support:
- Option 1 - Direct Payment
- Option 2 - The supported person selects the support which is required, which is then arranged by the local authority
- Option 3 - Support is selected and arranged by the local authority
- Option 4 - A combination of the above
The general provisions of the SDS Act will apply to care homes, as they will for other areas of social care. The Scottish Government has consulted on whether people living in residential care should be entitled to Direct Payments and in its response to the consultation, Ministers confirmed that they are going to pursue some test site activity on Direct Payments for residential care.
Irrespective of how that work develops, we already know of imaginative arrangements that have been piloted around the use of Direct Payments to build a package of support at home, rather than enter into a care home. The Alzheimer Scotland work in North Ayrshire is instructive here.
The practical implementation of SDS will require a shift towards outcomes based assessment and review. Recent developments within this field include the creation and gradual roll-out of 'Talking Points', which is an outcomes-focused assessment process designed to put the individual in control of their support arrangements. Work undertaken by Scottish Borders Council, the Joint Improvement Team (JIT) and a number of independent sector providers demonstrated that this approach is just as applicable to residential settings as to care at home. However, its success will require strong leadership, a commitment to cultural change and the tenacious pursuit of personalised care.
In a similar vein, 'My Home Life' is a collaborative movement focused on personalising practice within care homes for older people. It is underpinned by an evidence base developed by more than 60 academic researchers from universities across the UK. It identifies best practice in care homes for older people in the 21st century and has a particular focus on personalisation:
- Giving older people the opportunity to integrate their past and present life experience along with their priorities for the future;
- linking with communities;
- thinking creatively about meeting communication needs;
- being open to meeting particular spiritual, cultural, social and sexual needs sensitively;
- understanding and respecting the significance of relationships within the home;
- recognising roles, rights and responsibilities; and
- creating opportunities for giving and receiving, and for meaningful activity.
While these are two good examples of personalisation initiatives in care homes, the consensus among key parties such as the Mental Welfare Commission and the Scottish Human Rights Commission is that there is much work to be done before personalisation becomes an embedded principle in the sector.,  Guardianship and the embedding of the Mental Health Act are seen as high priorities to further the Personalisation agenda.
Models of Personalised Care within Grouped Settings
There is general agreement that the future of residential care needs to be different if personalised outcomes are to be optimised. Over the last two decades, while there have been improvements in the delivery of care within residential settings, there has been a more limited development of personalised arrangements.
Some of the less desirable features of group living - such as shared bedrooms and bathrooms - have gradually been phased out; but in general terms care packages continue to be designed for the convenience of the commissioner and provider rather than the service user.
That is not to say that high quality care and support is not being delivered - very often it is; but the design of that experience tends to be based on the group environment rather than tailored to individual preference. Moving away from this circumstance will require significant culture change, and potentially greater levels of private and state investment.
So what is to be done? The optimisation of personalised service arrangements will require reform in a number of areas:
Finance and Funding
- Greater transparency in the fee rate attached to care within a grouped living arrangement, separating out the cost of care, rent, board and recreation;
- Consideration of the conditions of residence, ranging from tenancy or owner occupier models through to residency agreements; and
- Greater control over personal budgets and income sources such as pension arrangements.
Care and Support
- Enhanced individual leverage to control the care package, based on individually identified outcomes and goals;
- Normalisation of healthcare arrangements - accessible GP, nursing and other specialist input as required;
- Greater control over the 'who-what-where-how-when' of care delivery; and
- Greater opportunity to involve unpaid carers in support arrangements.
- The normalisation of daily living arrangements, including expanded opportunities to live with a spouse, partner or friend;
- Greater opportunities for life outside of the home; and
- Greater control and choice over recreation and physical activities.
In our view, the features of a more personalised care arrangement will be differentially expressed depending on the structure of the residential or grouped living model. In general, three types of accommodation will be at the heart of the development of the residential sector over the next period: an evolution and expansion of the extra-care housing sector; a residential sector focused on rehabilitation and prevention (step-down / step-up care); and a smaller, more specialised residential sector focused on delivering high quality 24-hour care for people with substantial care needs.
|Extra-care Housing||Independent Living|| - Flexible delivery arrangement (opportunities to increase or decrease care input)
- Different physical configurations but typically multi-unit single campus at core (with opportunities for hub and spoke)
- Care adapted but otherwise fully functioning private residences
- High personalisation potential
- Tenancy / ownership models
|Short-term Residential Intermediate Care||Transition Care|| - Flexible delivery arrangement (opportunities to increase or decrease care input)
- Different physical configurations
- Physical environment structured towards rehabilitation (e.g. self-service kitchen)
- Moderate personalisation potential
- Residency model
|Specialist Residential||Long-term Care|| - More structured delivery arrangement (with higher levels of care input)
- Single site residential but with opportunities for hub and spoke
- 24-hour care input, often palliative or end-of-life care, with specialist clinical input
- Moderate personalisation potential
- Residency model with some potential to introduce tenancy / ownership arrangements
These categories are, of course, not definitive, mutually exclusive or exhaustive - but they broadly capture the future care functions of the residential / grouped care sector.
While personalised care should be supported across the broad areas outlined above, it was suggested that housing-based models offer the greatest possibility of personalised service. That is because this model potentially maximises control over funding, environment, care and recreation. However work will need to be undertaken across all care environments to ensure that personalisation is a central driver of service design.
The delivery of the reforms set out above could, in principle, transform the delivery of care and support in the residential sector. We know that some of this is being done already: for example, a person living with their spouse in a self-contained unit, underpinned by a tenancy type arrangement, who has care delivered by a combination of family members, externally purchased provision and some on-site support. We also know of people with high levels of dependency being supported in specialist accommodation but with support tailored to their own ends: support from the family GP and geriatricians; care input from family members; mealtimes and recreation designed around personal preferences. Or again, someone who has been discharged from hospital and who has yet to regain their independence can access short-term residential care with a rehabilitation package built around personal capabilities and goals. So it's not that this cannot be achieved - it's just that these examples are not happening at scale.
Case Study One: Croftspar
Croftspar is a group of eight individual homes in Springboig, Glasgow, which has built-in assistive technology and access to 24-hour care. It was developed by Alzheimer Scotland, Glasgow City Council and Cube Housing Association. It supports people with dementia to live independently, to hold their own tenancy and to maximise their natural support mechanisms.
The full cost of the development in 2004 was £773,444, with the initial cost being borne by Glasgow City Council. The tenants pay rent and service charges to the housing provider and will typically receive housing benefit.
Glasgow City Council funds Alzheimer Scotland to provide the care and support. There is a means-tested contribution from tenants towards the cost of their care.
The facility is part of a wider community, it provides a dementia-friendly environment and it offers therapeutic support. The indications are that this has helped to address cognitive impairments, functional limitations and behavioural issues. The arrangement has helped to delay deterioration and it has enhanced coping capacities.
From the perspective of engendering a personalised approach, it could be argued that this approach has many virtues: it would allow an individual to build a matrix of support with the relevant input from family and internal and external providers and the right balance between residential and home life. It would mean enhanced flexibility to access care at the right times and in the right way.
At the same time, the separation of 'hotel costs' (accommodation and living costs) and care costs presents some challenges for providers; for example, in relation to workforce and more general financial planning, as the type and level of provision required in the medium to long-term is driven by individual's choices and therefore harder to predict and plan for. Furthermore, the question of responsibility for the health and safety of external staff coming into the residence also arises, along with issues as varied as adult protection, regulation and insurance. For example, it is likely to mean that the registration requirements of the Care Inspectorate need to be reformed.
Case Study Two: CARRICKSTONE INTERMEDIATE CARE SERVICE
The main aim of Carrickstone Intermediate Care Service is to support the individual to return home. Staff members are focussed on the rehabilitation goals of each resident, encouraging the individual to undertake personal care tasks for themselves. The staff group works very much as a single team, combining professional roles, adopting a holistic approach to delivery.
Carrickstone House is located in Cumbernauld and owned by Four Seasons Health Care. The unit provides 20 intermediate beds via a contract agreement with NHS Lanarkshire. The beds are managed by consultant geriatricians from Monklands District General Hospital supported by GP input. The Allied Healthcare Professional (AHP) input to the beds is provided by NHS Lanarkshire utilising in reach staff from the Community Assessment and Rehabilitation team. Nursing care and Hotel services are provided by Four Seasons. The weekly contract cost per bed is £780.
Admission to the unit for the majority of patients occurs after an inpatient admission to Monklands Hospital. The Care of the Elderly team in Monklands identify patients from the Cumbernauld area who require ongoing rehabilitation or a period of "interim" care before a decision is taken regarding community care assessment.
Individuals can also be "stepped-up" from the community to Carrickstone via the responsible consultant geriatrician and can arrange transfer direct from the individual's home to the unit, thereby negating the need to go to an acute site.
Weekly multi-disciplinary meetings take place in the unit each week. These are attended by AHP's, Social Work, Medical and Nursing staff. Each patient has rehabilitation goals against which progress is reviewed daily.
Over half of intermediate care service users return home, where a transition team will continue to offer support at home. A number of the patients do not reach their rehabilitation goals in which case alternative support options are explored.
The development of protocols between care homes and care at home providers could mitigate some of these risks and there are lessons that can be learnt from other sectors in terms of financial modelling which takes account of the impact of individual choice. Moreover, it would be difficult to argue that these challenges on their own constitute sufficient reason not to explore options, or worse, to effectively restrict choice and control by failing to do so.
There is also a need to get into the detail of what sort of variation and choice can be provided in respect of the non-care services that a residential facility could provide: for example, can we facilitate greater choice over meals - what, when and where? Can we give more power to individuals to personalise their surroundings - to choose fixtures and fittings, and the layout of non-communal physical space?
Good Practice example: Specialist Long-term Care
Increasingly, specialist long-term care will involve more complex care packages, often requiring physician support. In addition to the traditional nursing care arrangement, each resident will be registered with a GP of their choice and can access GP support as required. There will also be NHS liaison and specialist nursing to help support nursing practice within the care home, access to Pharmacy support and (importantly) access to a range of specialist medical input, including, where appropriate, consultant geriatricians.
Nursing staff will be expected to have the training and skills to support complex nursing needs including: Tracheostomy Care; Percutaneous Endoscopic Gastrostomy (PEG) feeding; Delivery of IV fluids and/or IV antibiotics and Delivery of oxygen. The needs of residents will often be complex and unstable.
If we were to stratify the funding, it would allow for a clearer sense of what non-care service options cost and would allow for a range of packages to be developed - but a downside might be that we see quite dramatic variation in the quality of hotel services available. Just as in life, some people would be able to afford a high quality experience and others would not - the same would be true of the residential sector - but perhaps more pronounced. The solution here would be to ensure that certain minimum standards are obtained, underpinned by regulation and contractual obligations.
There is consensus that there is untapped potential for the residential sector to become more personalised; but it is not certain that we will realise that potential without an effective strategy to oversee its development.
To that end, the Task Force asks that in the production of a Scottish Government/COSLA strategy on reshaping residential care, the following recommendations are taken forward:
- The Scottish Government, COSLA and ADSW should make sure that arrangements are in place to support well-informed decision-making for people considering residential care. This will require effective information and advice being given to older people around the options that are available to them under the SDS legislation - drawing on the best practice profiled by Alzheimer Scotland and others. Advocacy groups for older people would promote the importance of transparency and help provide older people with full understanding of service provision and cost before they enter into a care home, as well as to provide them with a voice once they become residents.
- A formal engagement (board type) structure should be created for all care homes, based on the school parent council model to facilitate and strengthen ties with the community and to provide a layer of reporting and accountability.
- The Joint Improvement Team, Scottish Care, the Coalition of Care and Support Providers in Scotland (CCPS) and ADSW should support the roll-out of outcomes based assessment and review within residential settings, learning from the initial 'Talking Points' pilot work undertaken in Scottish Borders. This will require strong leadership, a commitment to cultural change and the tenacious pursuit of personalised care at local levels by commissioners and providers.
- People living in grouped care arrangements should be able to exercise choice and control over their care, support and daily living arrangements:
a) It is recommended that work is taken forward by COSLA, Scottish Care, CCPS, ADSW and a small number of providers on the personalisation of services within residential care as a proof of concept. In particular, the disaggregated delivery of hotel and care arrangements should be trialled to establish whether it is practicable and economically viable.
b) At a policy level, the Scottish Government and COSLA - with the relevant partners - should systematically review and remove any structural barriers to reform. For example, this is likely to require a change to Care Inspectorate registration requirements.
- The Scottish Government, COSLA and Scottish Care should undertake work to ensure that charging arrangements are transparent and stratified. If a fee is not broken down into its constituent elements, it does not allow the consumer to decide if value for money is being offered, or indeed whether an element of that package would be better procured from elsewhere. See Annex B for work by Laing and Buisson which has done this in for fees in England.
- The Scottish Government, COSLA, Scottish Care and CCPS should ensure that people are able to access the right type of tenure. For some, particularly within extra-care housing arrangements, this will mean an opportunity to enter into a tenancy or ownership arrangement; for others, it may mean a more flexible residency agreement.
There is no disagreement with a future vision of residential care which is more heavily personalised, with greater opportunities for customers to express choice and control over the services they use. The practical application of that aspiration is more difficult to express and it is evident that a number of obstacles will need to be overcome before we can expect a shift in that direction. However, it is our view that if the recommendations above are pursued, we will begin to see a shift towards more personalised arrangements for older people.
Email: George Whitton
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