Post Diagnostic Support

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By Anna Buchanan, CEO, Life Changes Trust

In 2013 the Scottish Government made this commitment:

“…by 2015/16, all people newly diagnosed with dementia will have a minimum of one year’s worth of post-diagnostic support coordinated by a Link Worker, including the building of a person-centred support plan”.

Recently published Scottish NHS Board Performance data reports that in 2016/17, three in five people newly diagnosed with dementia did not receive the minimum one year of support promised by the Scottish Government. The same was true in 2015/16.

An article in the Evening Express (7/2/2019) picked up on the fact that just 18.6% of newly diagnosed patients were referred for support across the NHS Grampian area in 2016-17. When asked about these statistics, a spokesperson for NHS Grampian explained that not everyone chooses to take the package of support. This supposes it was offered to everyone and that 81.4% of those people turned the offer down. If this is indeed the case, there are some questions that need to be asked and answered.

  1. Why do people feel they do not want the support?
  2. Is it perhaps being offered at the wrong time when people may still be coming to terms with their very recent diagnosis?
  3. Would it be better if support was offered on further occasions as well as immediately after diagnosis?
  4. Where else are people finding support in the community post-diagnosis?
  5. Should there be multiple points of access to post-diagnostic support?

However, the NHS statistics do not tell the whole story. If Grampian, for example, were to look at the ways in which people with dementia and carers access support in other ways, that is, not commissioned post-diagnostic support, we may see a more expansive picture. It would be a more complex picture, but it may be a more hopeful one that also gives a better idea of the reasons why people may not want to engage with what appears to be a formal service strongly correlated with a medical diagnosis.

The Life Changes Trust has invested around £800,000 in Grampian over the past four years and through this investment has, to date, reached upwards of 1,200 people with dementia and 800 unpaid carers through various types of support. Some attend health walks, art classes, and fitness sessions, others may join carers groups, or find peer support amongst other people with dementia in their local area. There are many other organisations, not funded by the Trust, delivering similar work throughout Grampian.

This may not seem like ‘post diagnostic support’ in the traditional sense at first, but when we consider what many of these community-based projects are providing by way of advice and information it certainly is support that is provided post-diagnosis. It is a less formal way of accessing post-diagnostic support, with the access point being through an interest or a familiar place.

For example, for someone with dementia who has a lifelong loyalty to Aberdeen FC, what better way to receive information, advice and support than by attending dementia friendly walking football or a health walk at Pittodrie? The work done by Aberdeen FC Community Trust provides a community of support and opportunities for respite, but they also refer people on to other organisations for more specific support.

If a person has dementia and English is not their first language, they may need extra support to find information and advice in their own language (which should be provided free of charge by statutory agencies). The Aberdeen Council for Voluntary Organisations is currently working to make sure that people living with dementia, and who are from European Ethnic Minority backgrounds, can receive the support they are entitled to. There are many Black and Minority Ethnic communities that need this extra support but who find it easier to accept when explained and delivered in their own peer group and in their own language.

‘HOME’

housing

A significant pilot project has run in Aberdeen since early 2016 – the Dementia Enablement Project run through Castlehill Housing Association’s Care and Repair service. Fully trained dementia enablement staff meet with people with dementia and carers in their own homes to talk about small changes that might be made in the home to help them stay there for as long as possible.

This is because dementia is not just about loss of memory, it can also lead to significant sensory challenges, where the brain may misinterpret information and cause disorientation. For example, a highly patterned carpet may make someone feel dizzy; or a mirror that reflects passers-by may cause a person to think that a stranger is in the house. Fear and loss of confidence can result in a person staying indoors and not exercising, which can lead to an increased risk of falls. Loss of short term memory can mean that medication is forgotten or taps are left running. When these things happen, carers may lose confidence in their ability to care sufficiently and feel they must look for a care home placement earlier than expected. Care and Repair offers a number of solutions to these issues, for free.

Care and Repair

By making small changes in the home at an early stage (early intervention) many people with dementia in Aberdeen are living more confidently in their homes for longer and carers are relieved of a certain amount of worry. The average cost per person assisted currently stands at £243, but is likely to be lower once the project has been completed. Statutory services do not fund a service like this at present, though the cost savings to the public purse of keeping people out of hospital and care homes is obvious.

The dementia enablement staff have come across many people living with dementia who have had a fairly recent diagnosis but who have never seen a Link Worker. Some were not offered the service or are on a waiting list. Dementia enablement staff have discovered that some people did not take up the offer of support because they did not feel ready for it at that time or did not understand what was being offered.

Care and Repair is able to access homes through a practical offer of support that focuses on the home. Link Workers also carry out most of their valuable work by visiting people in the home – but if a person has previously said they do not want post-diagnostic support then Link Workers have no authority to cross the threshold.  Care and Repair’s staff enter on a different basis and, once trusted, are able to offer information and advice, and make referrals to other agencies. In Aberdeen many people with dementia and unpaid carers have been supported by the dementia enablement staff to claim benefits they are entitled to, amounting to more than £300,000 to date, which is almost equal to the amount invested in the project by the Trust.

The pilot project, which operates in four areas across Scotland, is being evaluated and an interim report will be available in early spring 2019.

This is not a suggestion that Link Workers should be replaced or removed; we do, in fact, need more of them. However, we also need a broader understanding of the variety of ways in which post-diagnostic support might be provided across the community. The recent statistics show that around 10,500 people newly diagnosed with dementia in Scotland in 2016/17 did not receive the one year’s support to which they were entitled and, of these, around 9,300 were not referred for support at all, for whatever reason. We should reflect on this and consider the value of those organisations that are providing good quality, but less formal, post-diagnostic support.

Integration Joint Boards should consider how they invest in these organisations, which provide excellent value for money. They should look at more than one model for the delivery of post-diagnostic support and explore more deeply the ways in which people with dementia would prefer to receive that support in the first 12 months and beyond. The value of peer support is under-explored. In time, IJBs may wish to consider accreditation for organisations that can provide high quality, highly localised post-diagnostic support in creative ways that help people engage more meaningfully with the offer.

Anna Buchanan, CEO, Life Changes Trust

Anna Buchanan _colour Jan 2018_Fotor

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