Response to Scottish Government Self-directed support strategy - Results

Consultation body

Scottish Government

Response date

May 2010

Focus of consultation

Self-directed support strategy

This section reports the results of the consultation event for people with dementia and carers hosted by Alzheimer Scotland in March 2010 in Kilmarnock. Participants identified the barriers they had faced to accessing and using self-directed support (usually direct payments) and the solutions they would like to see. They also looked at what self-directed support can mean at each stage of dementia.

Making self-directed support work for people with dementia

Communication & information

Barriers - Many people felt self-directed support is somewhat of a 'myth' and is surrounded by a lot of 'negativity'.

I look after my Dad and nothing like this (SDS) has ever been mentioned

Professional attitudes about self-directed support can be negative and put people off applying for it.

The first I heard of it [SDS] wasn't from social work but from Alzheimer Scotland

Care managers in older people's teams/community mental health teams (those most likely to be supporting people with dementia) were felt to have low levels of awareness and understanding of self-directed support.

The CPN mentioned it [SDS] but that was it – I just know of it, not about it

It shouldn't be a postcode lottery or depend on who you speak to. You should be able to go to any professional involved in care and they could tell you [about SDS] – there's no room for anomalies in health care

Participants felt that there is too much use of jargon to explain and inform about self-directed support and information is not freely available.

Lack of awareness in the general public about dementia can delay a person receiving a diagnosis and asking for help. There is often a stigma attached to asking for help/support and people often don't know what you are entitled to and how to get it. Many years after diagnosis of dementia people with the condition and their carers still unaware of the existence of self-directed support or have very limited knowledge about it. This denies people with dementia the opportunity to plan in advance.

It's been 10 years [of caring for husband with dementia] and I'm just finding out about this [SDS] now.

It is difficult for individuals to find positive stories of people who have dementia using self-directed support.

Solutions – Information needs to be given using plain language which is simple, independent and non-biased. Ensure provision of concise, consistent information, including information about the person with dementia's rights, assessment process, local eligibility criteria and self-directed support.

Provide information packs for people with dementia and their carers

Provide positive examples of how people with dementia are using self-directed support.

Include people with dementia in the publicity and promotional materials

Information should be provided at earliest opportunity and professionals should take a pro-active approach.

Information about support organisations should be made readily available: people wanted a person available to explain and guide them through the process, answering any questions, and possibly connecting to other people using self-directed support, perhaps through the use of a 'buddy system'.

To increase levels of professional knowledge and understanding of self-directed support, training needs to be more comprehensive and include the range of professionals that person with dementia comes into contact with such as GPs, consultants, allied health professionals, and social work staff. This should form part of integrated care pathways for people with dementia.

Information should also be easily accessible within the community and much more widely publicised (e.g. community centres, carers' centres, post offices etc).

Participants felt that there should be a national media campaign.

Assessment and eligibility

Barriers - Eligibility criteria can often make it difficult for people to receive support at the earlier stages of dementia, and this lack of early support and intervention, current assessment process was felt to be unfair and puts many people with dementia at a disadvantage. Carers' needs are not always recognised and considered when planning care.

They're [professionals] trying to fit people's lives into the system

There is too much paper work and duplication of paperwork. Social work and health systems are not always compatible and leads to people having to go through multiple assessments.

Assessments are based on need and not outcomes the individual with dementia wishes to achieve.

It's about support that keeps people doing what they've always done, not just the basic of staying alive – and keeps carers having a life too.

Some people felt excluded from the assessment process and did not know that the assessment document should be shared with them when complete

A shared assessment was done, but it wasn't shared with us.

Self-assessment and co-production does not exist, the person with dementia and their families felt they had little choice or control over what services were offered or received.

Solutions – People need to be given information at the right time for them and not wait until point of crisis when applying for self-directed support can be an added stress that carers are unable to consider.

Self-directed support assessment should become usual practice and be triggered automatically, rather than opting in.

People and systems must adapt

Eligibility needs to be from onset of dementia where there is role for preventative support and/or advanced planning. Managing a small budget at earlier stage may enable people to become more familiarised with processes and more able to manage larger and more complex packages later on, therefore giving people the choice to stay at home and remain connected to friends, family and community.

Carers involved as appropriate at all stages of self-directed support process.

The hospital knew her diagnosis but I didn't, but I was dealing with the behaviour – you're stuck in the middle

One assessment , which is user led, should be carried out and information shared appropriately, ensuring that the person with dementia has the right to a family member/representative being present at assessment.

There should be better and wider use of carers' assessment. Assessments should be carried out by person with awareness of dementia and ensure the person with dementia receives a copy of the assessment.

The assessment process needs to change to be more outcomes-focused rather than needs/service led such as the single shared assessment. Tools such as 'Talking Points' should be more widely used to ensure the person with dementia and their families are achieving the outcomes that are important to them and not offered services that fail to achieve their desired result.

Once information is given to officialdom they control it, then somebody decides what services should be given but not with us

Assessors need to have the right information to ensure people can make informed choices about self-directed support; wider use of independent support organisation will enable people to receive un-biased information on the realities of self-directed support.

Budgets

Barriers - There is a lack of flexibility in local authority and health budgets, limited resources and few appropriate services for people under 65. Different levels of direct payment rates cause inequality and make consistency difficult and limited budget (if any) for direct payments within local authorities. Waiting lists, overspent budgets, budgets allocated to block contracted/building based services can mean despite the person meeting eligibility criteria to access self-directed support it can be difficult to actually do so.

More funding available for care within the home!

Different budgets are managed and controlled by different departments and ring-fenced for particular services/clients and this can make it difficult to access direct payments for all assessed needs. For example people may only be able to access real choice and control over one element of the care needs such as personal care as other services such as day care and respite care may not be available via a direct payment.

We have an ageing population and demand for services is increasing while funding is decreasing.

The rates applied to direct payments can be significantly less than that of in-house or contract services provided to local authorities. This limits the choice of providers that direct payment recipients can choose from and creates an inequality with those who choose the traditional routes to services.

There is inequality between what is free from traditional services and what a direct payment recipient may receive. For example in some local authorities, transport to day care is free but a person who chooses to take a direct payment instead of traditional day care may not receive any transport costs within their direct payment and therefore is clearly disadvantaged.

Solutions - Free up resources including health, social work and housing, to allow for more creative use of budgets. Ensure people accessing self-directed support are able to access equitable resources that they would have received if they had chosen to use traditional model of service delivery and recognise that traditional models of service delivery might not always best meet the needs of the person with dementia and their families, and may also be more resource intensive than is required.

Ensure people with dementia and their families can exert real choice, control and flexibility over how their care and support needs are met.

Voluntary organisations can campaign/lobby government to release resources

Process

Barriers - The process of getting a direct payment was described as being full of red tape and further complicated by the fear factors, which included financial monitoring and employing staff. One issue was whether it was possible to employ relatives; there is no definition in current guidance of what might constitute 'exceptional circumstances' in which this might be possible.

People felt there is little flexibility, complicated systems, responsibility & requirements and lack of balance. Carers wanted to 'still have time to be daughter/son/wife husband' and expressed concern about additional stress of managing a direct payment. Individuals expressed their view that they had 'been blocked' by their local authority from accessing self-directed support.

I've tried to ask about direct payments but it's blocked – they [Social Work] completely talked me out of it

How come MPs can employ their relatives no questions asked but people with dementia can't?

It takes too long to process an application for self-directed support.

Solutions - Simplify the process including financial monitoring. Provide support for people to keep appropriate financial records from the beginning and not wait until a problem arises. Provide alternatives to directly employing staff and have more support available for people who do wish to employ staff.

Ensure 'personal budgets' available in all local authority areas and ability to use provider of choice and not just those that local authorities already contract with.

Explore different options such as third parties holding direct payments on behalf of the individual who are able and willing to deal with the stress.

Define exceptional circumstances and enable employment of relatives when appropriate checks have been completed.

Factor in 'time-out' for carers during assessment process to ensure they are not overloaded with caring and managing the direct payment.

Incorporate a national system that is transparent and details how many people request self-directed support and how many of those actually go on to receive it and record the reasons why people are not proceeding with their application for self-directed support. Use this information to reduce the barriers and enable more people to access the resource.

Ensure access to money quickly as debt causes further stress – set timescales.

Support

Barriers - Lack of support available to find the right support and access specialist services, little opportunity to access peer support and difficulty having the time to find out about/investigate self-directed support whilst caring

[Speaking of lack of choice of types of support in existing system] They [social work staff] have got their routines and stick with them

Solutions – Offer a range of support services such as 'brokers' who can support people to find the right support for their individual needs. Ensure there is more comprehensive support with HR and payroll, opportunities for peer support with others new to self-directed support and sharing experiences and ways of overcoming any difficulties and ensure funding for this is incorporated into the self-directed support budget.

Improve the development of marketplace and enable further development of creative, flexible, specialist support services that are able to respond to the individuals needs. Ensure practical assistance with paperwork is available in all local authority areas.

What does self-directed support mean at the early stages of dementia?

People want earlier intervention, with move away from crisis management. Often at the earlier stages of the dementia people are not eligible for services as they are not deemed to have 'critical or substantial' needs, but loss of employment, difficulty maintaining social contacts and withdrawal from normal activities can lead to people with dementia becoming isolated, withdrawn and can negatively affect relationships with family and friends.

Early support and intervention enables the person with dementia and family to build up relationships with support staff, which in turn means that the person with dementia is much more able to articulate their wants, needs and how they would like to be supported. This could also help overcome reluctance to accept support that many people with dementia experience.

GPs are first point of contact and can be a gateway to information; they need to have to skills to signpost people to the right support, such as providing information on Alzheimer Scotland's Dementia Helpline.

Information needs to be given in a sensitive manner, recognising that the time following diagnosis is a difficult time for people with dementia and their families. Self-directed support services need to be able to offer home visits, as the person may feel there is stigma and be reluctant to seek or accept help or information and to access services. People may need support to be able to rebuild their confidence so that they can articulate what they want and recognise what support they would like in the future. There needs to be a sensitive approach to helping people think about and plan for future care needs, including if they would like to use self-directed support.

Use of a small budget at an early stage enables a person with dementia to access a range of post-diagnostic and community supports that might help them to come to terms with the diagnosis and to access appropriate individualised support including being able to buy small pieces of equipment that can help to maintain independence for longer.

Help and guidance to put in place power of attorney and advanced statements will help ensure the person remains at centre of care in the future and that their wishes are clearly stated and can be understood when they are unable to express their wishes or lack the capacity to do so. A small amount of information and support at early stage enables person to access more information and support as the illness progresses.

More control of care EMPOWERS

What does self-directed support mean at the middle stages of dementia?

It is important to have received the right support at the early stage of dementia; this empowers the person with dementia to make informed choices about how they would like to be supported at the point that they become eligible for formal support services.

A lot of direct payments are done in crisis, but they shouldn't be, it should be pre-planned. I want to help people think out of the box, but you can't do that if it's a crisis. - Professional

Anecdotal evidence suggests the process of receiving a diagnosis may have taken longer for people under 65 years so that they may be coming into contact with services at a more advanced stage of the illness. For people under 65 years there is a lack of age appropriate services and self-directed support may be more appropriate to develop more personalised support.

It is important to be able to access flexible services that can respond to a person's individual needs and circumstances, keeping them connected to their community and natural supports.

Carers' needs must be considered to ensure they do not withdraw from their natural support networks, regular time out from caring responsibilities may enable the carer to continue caring for longer.

Carers often 'take up the slack' and provide a lot of hidden care such as dealing with finances, paying bills, maintaining the household (gardening, cleaning, shopping, re-decorating, laundry etc), support to attend appointments (medical, dental, assessment etc) and social support/stimulation. Carers need support to ensure that they have a life too.

The person with dementia can become overly reliant on informal family carers and be reluctant to accept support from formal carers/services.

What does self-directed support mean at the advanced stages of dementia?

For many people the illness can deteriorate rapidly at the advanced stages. It is important to have had the support to plan and make informed choices and decisions. Often admission to hospital or emergency respite will result in admission to care home, even when this is against the person with dementia and their families' wishes.

Hospital to nursing homes (not always appropriate)

There is a need for more options to be available, including specialist palliative care services, which can be purchased using self-directed support. The assessment process needs to be flexible enough to respond to changing needs. It is paramount that carers get the right support at this stage as it can be such an intensive, stressful time which can lead to the carer having health problems and possibly being unable to continue to provide ongoing support. For people under 65 years, traditional models of residential care can be particularly inappropriate to meet their needs.

Carers need to remain connected to their friends, families and community and not feel guilty that they are failing in their responsibilities to the person with dementia.

I wouldn't want to be paid for the care I give my mother – I'd want to use a payment to get help from someone else, not take it all on myself

Carers may be happy to continue to provide support with tasks normally offered via formal services such as personal care but need other, more flexible support which may incur a charge.

Family will make it work, if no family much harder

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