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Striving for the best dementia care

It takes an average of 17 years in the NHS from the point where best practice is defined to it becoming what happens in everyday care. With the dementia challenge we face, it’s a time-frame that has to shorten.

In my view, in the NHS we are good at making the necessary inquiries when something goes wrong but less strong on finding out what lies behind organisations that achieve high-quality care.

Two years ago I became the senior responsible officer for the dementia programme in London in my role as associate medical director for mental health for NHS London.

I came to the role with an unashamed bias for primary care leadership as a result of my own experience of working with GPs in large health centres for 20 years as a psychiatrist.

We had very little money for this dementia programme – £165,000 from the Department of Health’s ‘reducing anti-psychotic intervention programme’, so the focus had to be on galvanising people to focus on common goals and to share good practice.

We have used several means to
achieve this:

⦁ a primary care leadership programme with six dedicated GP leaders

⦁ establishing and building on pan-London multidisciplinary clinical networks

⦁ a committed project manager, Jen Watt

⦁ a London-wide dementia needs assessment

⦁ a London-wide training programme
with a ‘train-the-trainer’ dissemination model

⦁ a London-wide audit of antipsychotics use in people with dementia

⦁ online tools to share best practice and performance data.

Data that speaks

We began by asking what we knew about the state of dementia care in the capital.

A research report had already been carried out by the Alzheimer’s Society which was very useful in getting us started. We then commissioned a dementia needs assessment care pathways profiling report which provided information on:

⦁ the level of dementia need in each borough

⦁ the numbers of people in high-risk groups who could be targeted for early intervention

⦁ the levels of early identification and QOF primary care recognition

⦁ the level of the three core ‘best buys’ in dementia services : memory clinics, psychiatric liaison to A&E and acute trusts, and primary care support to care homes/home-based care

⦁ the level of unnecessary A&E referrals and admissions.

This report showed major variations in levels of need, access to services, quality, spend and QIPP opportunities across boroughs for both health and social care provision. The information was presented CCG by CCG and borough by borough. It was very powerful as a tool to start conversations such as:

⦁ Why are we so different?

⦁ Why do you have so many available home care packages and we have so few?

The information also showed which people in a community were at high risk of developing dementia and what the academic evidence suggested should be the prevalence rate for that area based on demographics.

Clinical networks and training

We looked at existing networks and found London has an amazingly cohesive pharmacist network. We engaged with the chief pharmacists in the 27 acute trusts, 31 PCTs and 10 mental health trusts to carry out CCG audits, develop medicines management strategies and advise on how best to support GP colleagues.

 We put in place a second network of clinical directors of older adult services in mental health trusts.

Jen Watt, our dementia project manager, was able to get some money (£45,000) from the continuing professional development fund to establish a ‘train the trainer’ training model. Each acute trust has put forward four senior staff members who have undergone training that is now carried out in 10-30 minutes on wards with the modules covering:

⦁ awareness of dementia prevalence

⦁ recognising a patient with dementia

⦁ adjustments to make if working with someone with dementia

⦁ most common reasons people present or get admitted to A&E such as infections and respiratory conditions.

For primary care we decided to have a GP dementia leader from each of the six commissioning clusters in London. (see box, page 20). 

Transparent website

We created a website of all the training materials, along with examples of best practice.

Some areas of London have excellent LESs where GPs provide proactive care working with pharmacists, geriatricians and psychiatrists from the mental health trusts to provide regular ‘care home ward rounds’, review the prescribing of medications, review care plans and train and supervise care home staff. This proactive systematic care has made  a significant difference in the rates of patients who are being sent to A&E and admitted to the acute trust.

The website also shows the standards of care in every London GP practice for 28 key clinical standards in London. This programme was spearheaded by key London GP leaders Dr Howard Freeman and Dr Michelle Drage.

The commitment of London GPs to this level of transparency is very impressive and other sectors are now committed to following this example.

It also has a feedback function about care homes to help inform families’ choices when they can no longer care for the person with dementia themselves.

Read coding

As with the rest of the country, there is a big gap between the expected prevalence of dementia calculated by public health and the identification rate on GP registers and our GP dementia leads have looked at this (see box on page 20).

There are so many Read codes and it can be difficult to translate an ICD code into a GP Read code. But without this, the
patient doesn’t show up on the dementia register.

Dr Paul Russell and Professor Sube  Banerjee, the clinical lead and the adviser for dementia London, have mapped all the Read codes onto the ICD codes. This also ties in with how we have been developing CQUINs into acute and mental health trust contracts in the capital.

It was agreed two years ago that when patients leave a provider, whether it is an acute or mental health trust following any one of an episode of care, or an outpatient appointment or a community nurse or health team appointment, the discharge  letter would include the ICD code, medication and physical health needs and details of follow-up care appointments.

 Dr Paddy Glakin of London-wide LMCs developed a template based on what
the research evidence identified as the ideal communication pathway from secondary care to primary care.


Each of the 28 CCGs now has a named dementia lead and all of the 31 London CCGs have a mental health lead with six having a clinical director for mental health and dementia.

London now has the lowest regional rate and fastest reducing rate of antipsychotic prescribing.

At the moment, the NHS is very much going towards more localism. We can all  see the sense of developing the best local services for local needs and
arrangements but CCG leaders are asking how to share learning and prevent unnecessary duplication so they can meet their challenging agenda of providing clinical care and being skilled commissioners.

Having a single, easily identifiable goal to reduce antipsychotic use really helped raise awareness about what needed to be achieved in a way that felt feasible to front-line staff.

 Our work has involved a lot of meetings and a lot of them have been held via teleconferences. It is humbling how many clinicians make time to call in and contribute their knowledge for the benefit of London patients.

Dr Geraldine Strathdee is associate medical director, mental health, for NHS London

60-second summary

⦁ Initiative A London-wide focus on reducing antipsychotic prescribing and improving dementia care

⦁ Staffing Six primary care leaders recruited, which has helped improve rates of early identification of dementia and coding and achieved major reductions in unsafe prescribing. Existing network of prescribing leads helped with CCG audit of antipsychotic prescribing.
New network of clinical
directors for older adult services in mental health trusts set up. A total of 101 trainers from the acute  trusts to roll out 10 to 30-minute training sessions on how to identify dementia, adjust working methods for people with dementia and prevent unnecessary A&E presentations and admissions

⦁ Funding £165,000

⦁ Outcomes London has lowest regional rate of antipsychotic prescribing and fastest improvement rate

⦁ Contact  Email -

The role of a GP dementia leader

GP Dr Paul Russell is clinical lead for older people for Waltham Forest CCG and one of the six primary care leaders for dementia recruited by NHS London.

I was recruited in June 2012 and the role takes up on average about a session a week.

I’m a recently qualified GP. Nevertheless I am already aware of the challenges and strains involved in providing dementia care.

One of the first things I did was discuss with my five peers the needs assessment exercise that had just been done by NHS London.

I was fortunate to be able to share this data with local commissioners and I didn’t even need to articulate the information for a particular area. GPs themselves homed in on how their patch was doing and the conversations began from there.

 You get a sense that everyone is interested in how we can improve dementia care but people get flummoxed about knowing exactly what to do. It was a big help having a central place to take ‘findings’ back to. So, for example, when we highlighted the issue of coding, it was made part of a CQUIN that codes had to be put on discharge letters. Similarly, when the GPs said how important training was, we fed that back to the centre and training was created.

I know some GPs are concerned the services are not there for patients if diagnosis rates increase. But if we ignore the problem then that will prevent us solving it because we need clarity on resources.

There are so many areas of dementia care that I struggled at the beginning to identify what was the most important thing to do, as we need improvements in all of them. The evidence on diagnosis shows that once the person and relatives know the problem is dementia, a better quality of life ensues. Being on the register also means the patient gets an annual dementia review every year. Someone without that code might be left until they’re in a crisis and they can then end up in hospital for several months. Prevalence is the place to start.

A big part of my work has been looking at Read coding to improve diagnosis rates. If you don’t use the right Read code – one that correlates with an ICD code – the patient doesn’t end up on the register.

We found that coding of dementia is unnecessarily complicated, so have recommended GPs use just four Read codes to overcome this.  For more information go to

In my practice we had identified about 65 people with dementia and since using these codes that’s doubled to 130.

Dr Paul Russell is GP dementia leader for Waltham Forest CCG and the NHS London mental health programme

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