I have to say that the final specification corresponds very poorly with my views, and I am sure with those of the rest of the campaign group.
It is basically the same as the original proposals with the plan to include the over 75s taken out.
While it is good to see that, for the moment anyway, there are no plans to screen every person over 75, the same concerns exist for all those in what the DES deems to be at risk groups. It is still an unsolicited and unexpected enquiry about memory based not on the doctor’s genuine concern, but merely on a person being in a particular group.
There is talk about consent for the assessment – but there is no consent to being asked a question about your memory in the first place during a routine review. Will consent for the assessment be fully informed with an account of the risk of over-diagnosis?
The DES is entirely targeted at increasing the diagnosis rates of dementia, with nothing here for people who are already diagnosed, and very little in terms of support even for these new cases. It reminds me of the marketing strategies for banks where all the emphasis is to entice new customers with start-up deals, but once you are in you are forgotten.
We may change the statistics on diagnosis rates, although we don’t know if for better or worse since we don’t know what the best rate is, but I see nothing in it that will improve care – and there is still the major concern that it will overwhelm the memory clinics so that care of those diagnosed deteriorates due to strain on the system.
We suggested on 6 February 2013 the following to the Department of Health:
- GPs, families, carers, social work departments and secondary care colleagues identify patients in need of more support.
- Formal arrangements to share information across the necessary specialities.
- Secondary care colleagues to discuss /meet/review patients and their families as necessary. This can be done at a venue best suiting the patient and her/his family, but the GP surgery could be offered as an ideal venue for non-housebound patients. A DES could partly be used to pay for room use for these clinics.
- All new diagnoses could be reviewed in this clinic within a certain time frame in order to ensure that appropriate care and support is provided for the patient and their carers. Separate arrangements could be made for patients who are housebound.
- The information gathered is shared between this group with permission and to be reviewed at clinically necessary intervals
- This could take the form of a shared care/patient held record/ plan, whose details are copied to necessary parties.
- The GP takes the lead for care of co-and multi-morbidities coordination with clinical input as clinically required could also conduct physical reviews of these patients at the same time where these are required.
- More proactive systems in place for end of life care.
- More proactive systems in place for helping patients and their carers with issues such as advanced care planning/power of attorney where this is appropriate and wanted by the patient/family.
Were the DES to look something like this, it would have had our whole-hearted support.