Dementia - Beyond Planning

We have just submitted our draft commissioning plans for 13/14. Pages of trajectories, targets, pledges and aspirations. The team have put a huge amount of effort into the document, translated guidance and the new system, and we are now currently consulting with partners and patients.

One of our local and national priorities will be dementia. We have a national target to increase the number of patients diagnosed with dementia, as have all CCGs. Putting the issue of screening aside, is early diagnosis a good thing? Does it matter if treatments aren't effective for all, if a delay in progression is likely to be the best outcome? We are also aiming to reduce antipsychotic prescribing in patients with dementia. It's important to look behind the targets, to talk to patients, to see if what we are doing is likely to make a difference.

So I recently met a group of carers, all with relatives with dementia. They were an inspirational group of people, and it was one of my highlights as a CCG Chair to spend some time with them, realising how they provided mutual support for each other. It was also clear that they shared their frustrations, their anger with the condition and with the care system. There were plenty of tears during the meeting. This was the reason behind the plans.

Clear themes emerged from the discussion.

Diagnosis

All used a common word to describe the process of diagnosis. It was a 'battle'. In some cases it took years. The younger the patient, the harder it seemed. Stories were relayed of stressful trips to tertiary centres, to see specialist neurologists, only to be told their loved one's memory was not as good as it used to be. 'I'd told them that, I'd known him for years.' Nearly all had been diagnosed with depression first. 'If he was depressed, it was because he knew what was happening. No one took into account his family history of dementia.'

All agreed that early diagnosis would have been beneficial. But it wasn't just about treatment. It was clear that they valued the mutual support available, the benefit of talking to other carers abut how to cope with difficult behaviour, how to reassure an anxious husband or wife, avoid unnecessary medication. A recognition that their husband wasn't himself, that they were right and that they could explain the diagnosis to people.

Continuity

After diagnosis what was the most valuable aspect of care? Continuity. There was significant anger at changes to carers, to services that had been changed. Trusting a carer was so important, establishing a routine crucial. Changing times of service offered, the carers involved and worst of all insisting on a move to a different care home had significant effects on patients and their families.

Understanding

Carers weren't embarrassed by their loved one's behaviour or condition. But they did want understanding and compassion. This included health professionals, carers and the public. There were positive stories about the police, about officers going above and beyond to make sure patients were safe. What would happen if someone forgot to pay and walked out of a shop? This was a cause of some anxiety for some of the carers and patients.

Most said it would have been easier if the diagnosis had been cancer. There would have been a clearer path to diagnosis, more certainty regarding progression, more understanding.

Back to planning

This was the story behind the plans. We have already significantly improved the community memory service and commissioned an excellent outreach team. But we can do more - improving diagnosis accuracy, access to local scans and specialists. But its what we do afterwards that matters most. Focus on continuity, avoiding unnecessary antipsychotics. And listen to carers.


Bassetlaw Dementia Summit is on 5th February, bringing together more than 100 carers, professionals and partners including surgeries, hospitals, voluntary services and emergency services.

Opening the Doors

In November 2010 we took an important step as a practice. We opened our doors. We said, 'If you feel you need to see us, come down. If you feel you'd like a telephone call, ring us and we'll ring you back.'

Prior to November 2010 we had a GP on call, with patients phoning for urgent appointments. We would ring them back, usually ask them to come down depending on which GP was on call, and try to manage our workload and their problems. Phone calls and attendances would start at 3pm and finish at 6.30 at the earliest, often with visits in between, and there were extras in each routine clinic. Staff had the difficult job of managing demand amongst doctors, and we could see have up to 60-70 contacts in an afternoon for one GP.

To set some context, we are a large practice with 4 sites and over 27,000 patients. We have over 15,500 patients at our largest site, next to A&E but with high demand and high levels of social and medical morbidities. Over the last decade we had tried models such as nurse practitioner triage, GP telephone triage, minor illness clinics. We had recruited more doctors, more nurses, more reception staff due to a sustained rise in list size. How could we improve access for our patients?

So back to November 2010. The doors opened. Our Urgent Care Service was opened. We are very tight on space but we dedicated 3 clinical rooms to the service, built a separate entrance and allocated a separate waiting room and reception desk for registered patients with urgent, on the day, problems. No phone call needed. We employed nurse practitioners and an additional GP. We opened more routine appointments (no need for extras). We established a GP rota and ensured the Nurses and GPs worked as a team, with reception trained to ensure urgent problems such as chest pain or strokes were screened at the desk. Urgent and elective care was separated and access increased without contractual change or additional payment.

How do we judge if it has been successful? Patients think it is, and satisfaction surveys have been extremely positive. One patient judged the service as 8/10 because they'd 'had to wait 8 minutes', but the service has been extremely popular. We coped with a flu epidemic when we would have struggled, we can adapt the number of GPs and nurses per session as we can predict demand and routine surgeries now start and finish on time. Generally, patients are seen with 20 minutes, sometimes immediately, although at peak times it can be longer. Patients are learning when is best to attend. The doors open from 8.30 to 11.30 and 2.30 to 5.30. If there is a surge in demand GPs can help by seeing additional patients, but it is relatively rare. The 5.30-6.30 period is now relatively quiet.

In the last 12 months we have seen over 24,000 patients in our urgent care service. Most have been appropriate, and we have seen a small but significant reduction in A&E use during the day. Staff are not spending hours on the phone trying to get an urgent appointment for a patient, and visits seem to have reduced. Personally, I feel more confident having 'eyeballed' patients, and telephone calls are now genuinely for problems that can be dealt with on the phone. There are still some teething problems, some inappropriate attendances or days with longer waits, but we are getting there. We may have increased demand, but we provide a better service and we can't ask patients not to go to A&E if we don't provide an alternative.

Scrutiny

2012 has been quite a year. A year of personal scrutiny. What does that mean? The word apparently originates in Latin: scrutinium; from scrutari, meaning "those who search through piles of rubbish in the hope of finding something of value." A common definition is: 'to look closely (as for mistakes)'. Seems apt.

The start of the year (and the 2 years before that) saw our practice achieve the RCGP Quality Practice Award, a real team achievement and recognition of the focus on patient service, access and meaningful systems by the practice and its attached staff. The visit, following an enormous submission of 'evidence' included patient and staff interviews, observation and a nurse going through every drawer in my room to make sure all was in order and in date. That was a nervous ten minutes. We passed, and it has been a great experience for staff morale and a catalyst for patient engagement in the practice.

As a CCG Chair I then had an assessment to ensure I was able to fulfil the role, at least on paper. Maths and English tests and 360degree leadership surveys were followed by a visit to London where I was interviewed in great detail by the Hay Group and underwent a series of role play and written assessments. A full day later I had a stamp of approval and my first ever migraine. I also discovered that after a certain age writing for 30 mins in examination conditions is almost impossible. If the writer's block doesn't get you, the cramp will.

Next came authorisation. Armed with personal approval to be Chair, was the CCG up to it? We promised ourselves we'd take it as part of the day job, that we were doing the role, that we wouldn't get submerged in 'evidence.' We were wrong. To anyone who thought the process would simply be a formality, the fact that only 8 CCGs have been authorised without conditions (including Bassetlaw) will hopefully provide some assurance. We are a better CCG for having been through the process, but it's good to be focusing on quality and patients rather than process.

Finally, revalidation. My appraisal today was very similar to previous appraisals - a valuable opportunity to reflect on my clinical practice rather than policies and process. So what was different about a 'revalidation appraisal.' Mainly the surveys. Another 360 degree survey, but this time my colleagues in the practice, both clinical and managerial, including my secretary and other reception staff. This was followed by a patient survey. Both were done through an independent company (Edgecumbe) and the process was very smooth with clear reports afterwards. It felt much more personal than previous QOF surveys, and unlike previous 'leadership' surveys this was about my interactions with patients, my consultation skills, how I support staff.

So all my evidence has been submitted now for revalidation. The CCG has been authorised. The practice has the QPA for the next 3 years. A good year, with a focus on quality and assurance. 2013 should be easier. Wait, what's this on everyone's twitter feed? 35 outcomes for CCGs? A new planning framework? More scrutiny by the Local authority?

Better start collecting evidence.

The Importance of the Commissioning Assembly: Systems and Assurance

Today was the first meeting of the NHS Commissioning Assembly, bringing together senior figures within the NHSCB and CCGs. Its aim is to ensure that the new commissioning system is effective, accountable and works as a whole. It's important it succeeds. Patients may not care which level or organisation commissions their service, just that it is available, high quality and safe. But by looking at the different organisations potentially commissioning care for patients the challenge for the system is clear.




She was 60 and had terminal lung cancer. She'd had lots of investigations, treatment, the works. She was comforted by an excellent community nursing team, Macmillan nurse and the local hospice, as well as her GP. She assumed her care was well coordinated, that transition between services was seamless.


She wished now she had stopped smoking. She had tried. She had rung the smoking cessation service, but limited access and work commitments prevented her engaging fully.
Commissioned by public health/local authority.

When she had started coughing she was prompted to see her GP by a local lung cancer awareness campaign.
Commissioned by public health/local authority

Her GP, who was unaware of the campaign, saw her in a routine appointment 4 days later.
Commissioned by the NHSCB

A chest X-ray was arranged at the local hospital. This was abnormal and an urgent appointment was made at the local chest clinic.
Commissioned by the CCG

Lung cancer was diagnosed, and a referral made to a tertiary care centre. Chest surgery was performed.
Commissioned by the CCG with input from the regional cancer network

Oncologists recommended radiotherapy and a new form of chemotherapy.
Commissioned by the NHSCB as a specialised service with input from the regional cancer network 

Treatment was eventually unsuccessful and care was provided by the local palliative care and community nursing teams with hospice input.
Commissioned by the CCG with additional voluntary sector funding.

Decisions made at each level have effects throughout the the system. It's vital we work together. Health and Wellbeing Boards will play an important role in linking clinicians and local authorities. Annual assurance of CCGs by the NHSCB will be important. However, true quality and planning oversight will require a systems view, across localities. Quality Surveillance Groups across local area team footprints will be key but must not transfer control or responsibility centrally. We all have responsibility for this patient. I'm optimistic the Commissioning Assembly will facilitate this. The will to work together is definitely there.  Now to make it happen.

The Site Visit

Despite the fact we had arranged to meet at 8am many of us were there at 7.30.  Having been through the journey towards authorisation together, this was a big day.  As any X-Factor contestant will testify, it 'meant everything,' we'd 'put so much work into it' and we certainly felt like we were about to be judged.  Would we get past the NHS version of Boot Camp?

The site visit, according to the rhetoric, is meant to be supportive, constructive, developmental and a lot of other similar words. All positive.  The training session I'd attended had left me doubtful. Would it just be World Class Commissioning in another form?  Could a team of strangers really learn anything about (judge) our CCG in one day? 

Our anxieties were unfounded.   The tone was set by the panel chair immediately, and was excellent.  At the end of the day I was extremely proud of the CCG team, of their passion in describing patient service improvements and the pragmatism where challenges exist.

My top tips for site visits:

1.     Use the agenda to determine who should attend. Our agenda was very clear, identified which 'Key Lines of Enquiry’ (KLOEs) would be discussed when, and helped us field a strong team in each breakout session.

2.    Involve other stakeholders where possible. A local authority director of social care attended to describe our joint working and was extremely useful, particularly for the panel local authority representative.

3.    Examine each outstanding KLOE and make sure each is addressed. We prepared an evidence pack for the panel to reference and they found this very helpful.

4.    Use the presentation carefully. It's a short time to focus on the CCG story and subtly deal with as many KLOEs as possible. There's a full day ahead, but many areas that were difficult to get across in a paper submission can be clarified at this point.

5.    Make sure someone in each CCG group is responsible for checking KLOEs are addressed. Our panel were very organised, going through each in turn.  After the training I was worried this wouldn't be the case.  They also stuck to outstanding KLOEs only.

6.    Think what is likely to concern the panel most.  Safeguarding, clinical engagement, financial plans.  We had to emphasise the fact that we'd worked as one organisation with the PCT for over a year, and this was reflected in our policies/plans.

7.    Focus on patients.  All the areas above mean nothing if we don't relate them to patient care, better outcomes.  Identify areas where the CCG has dealt with quality issues, with financial issues, and where patient and clinician input has been effective in producing change.

The site visit was the positive experience it was meant to be.  We are a better CCG for having been through the authorisation journey.  Now to get back to focusing on the actual job, not the process.

County Hall

It takes me approximately 90 minutes to get to County Hall.  Only 45 miles but traffic, A-roads and the middle of Nottingham have an effect.  Life as a CCG Chair can mean a lot of time on the road, and as I usually do I hoped this meeting would be worth the trip.

Bassetlaw sits between Nottingham and South Yorkshire.  Secondary care flow is north, with 2-tier local authorities, public health, community and mental health services based to the south in Nottinghamshire. It's a complicated arrangement, and is another reason why it's important to have a local commissioning voice for the patients of Bassetlaw.

I reflected as I walked in that I now visit County Hall at least once monthly, often twice. I'd been a student in Nottingham, been to Trent Bridge and Nottingham Forest many times (don't tell my parents, I was studying...) but never noticed the huge building over the road.  It's a world of hushed corridors, paintings of stern looking councillors and, most noticeably, a place where to speak you usually have to press a button on a microphone. If only I could get the children at home to use the same system.

Back to the meeting. Health and Wellbeing Board meets 'Productive Notts', the joint partnership overseeing service change and efficiency within Nottinghamshire.  Was it worth it?  Absolutely.  I often wonder what the term 'clinical commissioner' means.  To me this was what it should mean.  Not about contracts, but working with others to improve services, integrate responsibility and put patients first.  With other CCG leads, we discussed care with chief executives of providers, social care directors and councillors.  The highlight was a presentation by a Professor of Geriatric Medicine.  I was one of his students, but didn't volunteer this as he looked younger than me.

Integration isn't about provision. It's about responsibility.  We shared this in County Hall.  The journey back seemed shorter, with a renewed sense of optimism.

Speaking the Same Language

She nodded when I told her what haircut I wanted. It was a nice setting, I had time on holiday that has been all too rare since becoming a CCG Chair, and the fact that the hairdresser could speak only Spanish seemed of little concern. My Spanish vocabulary was limited to a basic knowledge of tapas.

They say there are only two weeks between a good haircut and a bad one. Mine isn’t a bad one, it’s just not the one I wanted, and I have a fortnight to remember the lesson regarding the importance of communication.

This month the NHS Confederation has published resources aimed at developing Health and Wellbeing Boards. The timing is perfect. As we move from the language of establishing Boards to the language of what we are actually going to do together, it is essential that we understand each other. The historic difference in approach between local authorities and GPs needs to be discussed, understood and embraced if joint working is to be successful and the sum is to be greater than the individual parts. We are agreeing plans that will last much longer than two weeks. We need clear outcomes and responsibilities. We can all understand the challenges posed by inequalities, obesity or dementia. We have to be clear about action and delivery. There is no point having a talking shop if we don’t speak the same language.

At the last meeting of the Nottinghamshire Health and Wellbeing Board, there was a presentation from the County Council – an outline of their challenges, their responsibilities and the role they play in improving health outcomes. Speaking as a GP, it was invaluable. A language lesson.