Is there more to influencing English dementia policy than putting up a poster?

Now is the time to influence the new English dementia strategy. It is critically important that the informed opinions of a diverse group of stakeholders are involved in framing this policy.

As with any strategy document, it will be hard to be in full control of all of the facts and evidence, but I feel it’s very important that the views of people living with dementia are taken into account. This is not just a case of ‘involving’ people living with dementia where possible. It’s a case of allowing people living with dementia to lead in framing the narrative. I am not going to suggest what these topics might be. I think, for people with more advanced dementia, it is going to be important to listen to the views of carers, both unpaid and paid. There is currently a huge policy problem that the needs of carers themselves are unaddressed. Carers need to be better supported in a more structured way.

There has also been a problem rumbling on years: that people who’ve received a diagnosis of dementia are not signposted to appropriate services. While the job description of ‘dementia adviser’ was mooted, I don’t feel this goes nearly enough. The ‘Dementia Challengers’ website, through amazing personal efforts from its one-person designer who has personal experience of this field, offers useful leads on support for making informed choices for living well with dementia. There is no escaping the overwhelming desire, also, to see a system of specialist nurses participating in a care system.  Also, we are not making use of the substantial expertise of social work professionals. For issues such as advocacy over capacity and liberty, there are certain people with dementia who need to have equitable access to such resources.

I am a card-carrying signatory that each person living with dementia has an unique experience. I’ve even written a book on it. But it might help people with certain types of dementia to be reassured that there are clinicians with expertise in dementias, and can promote certain support groups (such as the excellent PPA Support Group). We need any diagnosis of dementia to be correct. I too often hear of people being given a diagnosis from somewhere, on the basis of a very scanty work-up. I understand the concerns that too many people are being denied of a correct diagnosis, but we must ensure that this part of the system is adequately resourced. It is possible there will be a breakthrough in drug development for the dementias in the near future. I wish the people working on this well. I am sure that they will not wish resources to be diverted disproportionately into this away from current care, or making it appear that the current living well of people with dementia is less of a priority?

The ‘dementia friendly communities’ policy plank is potentially fruitful. However, I think we should address how we hear a lot from corporates, but not much, in this jurisdiction, from professionals and practitioners who could be useful members of that community. Under the current legislative framework, both in domestic and international law, the rules of equality and human rights apply. These are not issues only for the ivory towers. They have direct relevance to the person with younger onset dementia who finds himself in an unfair dismissal situation. They also have relevance to the person in the badly run care home who feels (s) he is subject to “degrading treatment”.  Access to the law has been a real setback for the current Government, as has been access to see your GP. These create the perfect storm for a ‘dementia unfriendly community’.

I am the last person to denigrate the efforts of the vast army of people putting up posters, signing petitions, or handing out leaflets, in the name of ‘dementia awareness’. There is a huge danger that these posters, petitions and leaflets send out a message of ‘mission accomplished’, if there is no follow up? But I am likewise a bit burnt that the fact that #G7dementia and “Prime Minister’s Dementia Challenge” appeared from nowhere, and had the effect of threatening plurality in the dementia third sector.  I am concerned about this, and now is the time to make views known to the Baroness Sally Greengross, Chair of the All Party Parliamentary Group, Prof Alistair Burns, the clinical lead for dementia in England, and Prof Martin Rossor, lead for research for dementia for NIHR.

1 Response

  1. Trevor Fossey October 5, 2014 / 3:51 pm

    Professional carers, social care and the NHS clinicians are secretive and paternalistic – the current culture is to ‘hide’ records and to not share via online access to ALL data and records regarding the individual. In order to provide better (and joined up care) a change of culture is essential.

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