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Redesigning a Memory Service the Devon way
NHS England’s National Clinical Director for Dementia and a Devon-based consultant psychiatrist review impressive changes to dementia diagnosis and care in the West Country:
The diagnosis of dementia can be complex and time consuming.
It involves detailed clinical assessment of cognitive, mental and physical health, blood and radiological investigations and carer interviews.
While memory clinics bring together this high level of expertise, they require sufficient capacity for timely access and integration with other services.
Devon is a large county with a population over one million, a high proportion of older people and a significant and increasing prevalence of dementia. In 2012, there were five providers of memory assessment services, 17 referral routes and poor linkage between services. GPs were unclear about clinical pathways, time from referral to diagnosis was often over seven weeks, patients and their families made multiple assessment visits and diagnosis rates were 37% of estimated prevalence.
Consultation with people using the existing services indicated assessment processes were unduly stressful and people felt ‘cast adrift’ afterwards with poor integration with other services such as Older People Mental Health, Dementia Advisors, Memory Cafes and support groups.
Something had to be done.
A pan-Devon partnership project group was established in October 2012 with a number of local partners of whom Devon Partnership NHS Trust was the lead.
Following a review, including patient and carer experiences, four objectives were formed. First, there should be a fully integrated person-centred care pathway. Second, that early diagnosis should be made by a specialist memory clinic, with a clear referral pathway and a person-centred, ‘One Stop’ approach. Third, all GPs should be made able to make a diagnosis in the moderate to later stages of the illness. Fourth, that all patients should have consistent access to evidenced-based interventions wherever they were diagnosed
The redesign process was at all times in consultation with patients and carers, GPs, the voluntary sector and with reference to best practice. Project groups of clinicians from each organisation and locality were set up to design and deliver the new integrated service which was implemented across Devon nine months later.
The new model now delivers:
Support for GPs
- There is now one pathway across Devon for all referrals
- All GPs in Devon have received face-to-face training from GP Dementia Leads on referral criteria and diagnosis and management of dementia
- All referrals are triaged to ensure they meet the referral criteria and to check whether there are other clinical issues, for example depression which need to be addressed before assessment
- All clinic correspondence to patients, carers and GPs has been standardised across the county.
A ‘One Stop’, person-centred service
- The patient or carer chooses an appointment to suit through the Devon Access and Referral Team (DART)
- The patient and/or carer receive a telephone reminder before the appointment and are sent information about the clinic
- Diagnosis is made on one visit to a standardised clinic which are based in the three acute hospitals enabling the multidisciplinary assessment to be a truly ‘one-stop’ appointment with;
- A CT brain scan at the beginning of the assessment, ‘hot-reported’ to the clinic
- An assessment of the patient by a psychologist, carer by a nurse
- A consultant psychiatrist/geriatrician session to discuss the diagnosis, management and care plan
- Patients have dedicated parking at the hospitals to ensure they arrive at the clinic on time and relaxed and to ensure clinic ‘flow’
- A care plan is made with the patient and carer e.g. referring to the dementia advisor service, medication and psycho-social interventions
- To reduce the feeling of being ‘cast adrift’ after the diagnosis there is/are;
- A ‘clarification and questions’ follow-up appointment by their local Older Peoples Mental Health team
- A referral to the local Alzheimer’s Society Dementia Advisor (providing support, advice and a point of contact though out the course of the illness)
- Evidence-based psychosocial education and support (appendix 2). Commissioned as part of the new service
- Continued patient and carer feedback ensures continued development of the service
An integrated, efficient and evidenced-based model of care
- All providers now work in an integrated way along the care pathway and are clear about roles and responsibilities
- Clinical assessment and management is standardised across all clinics and based on best practice guidance eg NICE and existing local and national service models
- The system was designed using ‘lean’ principles and tested before implementation; analysing, testing and eliminating waste in processes eg we successfully introduced Band 4 psychology assistants and Band 5 nurses to replace more expensive staff and developed a ‘lean’ clinic process to maximise flow and capacity.
The main outcomes are: referral to diagnosis time initially reduced from over 50 (but sometimes took many months) to 12 days. (It subsequently stabilised at around 30 days until 2016. Since then, we have been operating at a mean referral to diagnosis time of around 40 days); dementia diagnosis rates have increased by 26%; patient and carer surveys and focus groups show the new person-centred approach, quality of information provided and transparency and openness of staff is highly valued; feedback is being used to further develop the service. The new ‘one-stop shop model’ helps minimise anxiety for the person attending for a very daunting assessment – as a patient who attended the Devon Memory Service said:
“Diagnosis on the day….. it was important because you weren’t kept waiting… we weren’t waiting for a letter, we weren’t waiting for a follow-up appointment, we just got it done with. We valued that very much”
The experience from Devon may be helpful for others who are considering looking at their memory services.
For more details please contact either of us:
- Alistair Burns, National Clinical Director for Dementia, email@example.com
- Colm Owens, Consultant Psychiatrist, Older People’s Mental Health Services, Devon Partnership NHS Trust, firstname.lastname@example.org
So my wife has said that she may not attend, how can I help her understand that it’s important to attend?
I recognise only the need to improve services and nothing but the best intentions.
I also note that Dr Colm Owens replied to Dr Hilton.
Might Dr Owens and the National Clinical Director respond specifically to other correspondents who have replied to this NHS Blog?
Peter J Gordon
Dear Alistair and Colm
Thanks for this, and I hope you are both well.
I was wondering how the teams work after this. Are the teams just seeing new patients i.e. where the nurses and doctors do no other clinical work, or do the diagnosing teams take up the same patients again if they run into problems? I feel very trapped and un-stretched and bored at the moment being allocated time to do no work other than see ‘feedback’ patients. If they develop BPSD etc later, where I work they are assessed by the separate CMHT. It would be helpful to know how the Devon teams divide responsibility.
Hello Claire and nice to hear from you.
Doctors, CPNs and psychology assistants work sessionally into the diagnostic clinics. Most usually work in CMHTs as well. Follow up work happens separately to the clinics in locations closer to patients’ homes. All of those who receive a diagnosis are offered a review by a local OPMH CPN together with an Alzheimer’s Society Dementia Support Worker. The focus of this meeting is to reflect on what the diagnosis means to the individual, consider anticipatory care planning and be referred, if this is wanted, to local post diagnostic “Memory Matters” groups. If ACI medication was started in the clinic it can be reviewed or titrated here. If there are emergent difficulties or neuropsychiatric symptoms, the person can move into the CMHT. Otherwise, standard follow up(including medication prescription and review) lies with primary care with input from the Dementia Support Workers.
And what happens if the patient lives alone and has no living family or relatives?
Who will be the carer(s)?
I note there were 5 memory clincs but now only 3, all located in acute hospitals. This results in longer journeys.
And as for “dedicated car parks” – don’t make me laugh!
Also by the time all these clever people discover dementia in its “moderate to late” phase it’s much too late. Such patients will need care on a 24/7 basis. I know. I nursed my wife through 5 years of Alzheimer’s disease.
Essentially all that has been done is to reduce the number of clinics and downgrade the staff.
Care plans are there to be ignored.
AND YOU STILL DO NOT KNOW THE CAUSE OF DEMENTIA NOR HOW TO CURE IT.
Dear Mr Greenwood
It can’t have been easy looking after your wife. I have personal as well as professional experience of caring for people with dementia. It is really tough and I don’t think as a society we take it seriously enough or recognise just how difficult it is for families and loved ones.
Coming to your point about the clinics. There were actually more than 5. We thought long and hard about reducing the number. We cover a very large rural patch and the car journeys to the 3 acute hospitals can be very long. However, we noted that most people ended up having to travel for brain scans anyway so we thought we would colocate the clinics with the scanner to reduce multiple journeys. Nevertheless, we felt rather nervous about doing this but the feedback we have received has been some of the most positive I’ve seen. There is still a home assessment function for people who can’t make it in.
Oh, and there really are dedicated, free, car parking spaces just outs one of the clinics.
The objective: “early diagnosis” based on a “One Stop” assessment.
This appears to be abandoning the Glasgow Declaration and its basis on human rights.
What happened to a “timely approach”?
There are, in my opinion, significant risks with this sort of approach including misdiagnosis, wrongful diagnosis and “risk of” dementia being labelled dementia.
Yours with concern
Dr Peter J. Gordon
(writing in a personal capacity)
Dear Dr. Gordon,
I note your concerns about risk of misdiagnosis or inappropriate diagnosis, I would share them. Dementias remain a clinical diagnosis and as clinicians we should all be humble enough to recognise this and ensure that our patients, their families and the general public understand this. A dementia diagnosis should not be taken lightly and not given unless there is a robust and verifiable history.
This service development was led by feedback from people who use services. There was a very clear message that a rationalisation of the different aspects of history gathering, examination and investigation into as few appointments as possible was what was wanted.
It should be noted that there is a facility within the clinics for further review and assessment if the situation is not clear. Patients who cannot reach the clinic continue to be seen at home
Dear Dr Owens,
I very much appreciate your kind and considered reply.
It is very helpful to understand that this service development was led by feedback from those who may be using services.
My concern, as you have rightfully picked up, is a general one: that complex conditions often need time (sequential assessments) as part of the diagnostic process. This is why I have argued publically for a timely approach to diagnosis that considers the WHO Wilson and Jungner criteria.
One-stop, fast-track clinics, with the objective of “early diagnosis” do not give this opportunity and may encourage over-certainty and result in unintended harms.
It is with these considerations in mind that the Glasgow Declaration was drawn up and has now been signed across all of Europe.
Perhaps you might share my frustration that press releases often fail to reflect uncertainty.
I wish your service development all the very best and am most grateful for your helpful reply.
Colm Owens and the Dementia Tsar state:
“We successfully introduced Band 4 psychology assistants and Band 5 nurses to replace more expensive staff and developed a ‘lean’ clinic process to maximise flow and capacity”.
This for a “one-stop” diagnosis for an objective that is based on “early diagnosis”.
Has this study considered harms?