Holding Course

2 months after major reforms, and the official birth date of clinical commissioning, there's a debate about the role of CCGs.  Whilst not unexpected, it does seem premature.

A Foundation Trust Chief Executive told me last week that clinical commissioning was the best thing to happen during his time in the NHS.  The increased level of clinical conversations, the focus on patients had helped his organisation and was a welcome change.  

So is now really the time for a change in direction?  Is the agenda different?  Undoubtedly there is a need for integration, for joint working with social care.  But this isn't new.  There is a need to understand the impact of conflicts of interest, but it's difficult to think of any organisation with no conflict whether political or as a provider of services.  

The goal of integration does not need a mandatory change of commissioning responsibility or NHS budgets, but a change in working and behaviour.

CCGs across the country are working to achieve integration and are working in partnership with local authorities.  Health and Wellbeing Boards are now established, but are not tested by an authorisation process and vary in membership and readiness to govern.  Some have had significant turnover in membership and political ideology following local elections.  

The NHS needed to change.  Now is the time to give clinical commissioning some time, the space it needs to succeed.  I'm confident it can, but we need to retain the sense of clinical responsibility for our patients, to continuously improve outcomes.  This won't come from advisory roles.  We have a real opportunity to change the way clinicians and managers view the NHS and its outcomes for patients.  Responsibility is key.

Apparently less than a third of people are aware there has been a major NHS reform.  Their focus is on provision, on their local services.  Satisfaction in the NHS remains high.  Changing commissioning roles too early may weaken the NHS and is unlikely to be of significant political benefit.

We are very much aware of the importance of time as clinicians, of giving treatments the opportunity to work.  Let's do the same with the NHS.  

Make It Simple.

At the Bassetlaw Dementia Summit in February, one of the carers delivered a plea from the carers' group.

'Our lives are hard enough. Your jobs are to make them simple.'

She went on to describe difficulties with diagnosis, difficulties with inconsistent carers, and most of all difficulties with social care, particularly the finance department. The challenges were clear. Sometimes we place obstacles for patients and carers, make their lives harder.

This week I've learned from experience. I'm a GP. I know the system. I'm confident on the phone. I understand which forms are which. And yet it's been a struggle, taken a lot of time and made me realise how hard the system must be for vulnerable patients, particularly the elderly or those with dementia.

The task? Sounds simple. A close relative has terminal cancer, is elderly and has dementia. He's struggling to get to hospice appointments, is starting to fall. He needs a blue badge or will become housebound. I offered to help. The forms were complex, quite medical. No mention of terminal illness though. I completed them, took a passport photo for him and rang the council a few days later to ask how long it would take to process. I was told 3 months. He doesn't have that long. They could expedite it if I could get a copy of his DS1500 (a form confirming terminal illness). This was completed a month ago. He hasn't got a copy, gets upset when I ask him for paperwork.

Nowhere on the blue badge form did it mention a DS1500. I couldn't get a copy from his GP, Macmillan nurse or consultant. The lady on the phone said they couldn't accept anything but the form, not even a letter from his GP. He'd probably have to come in for a medical. Where would he park? Would they ask him questions despite his dementia? Nothing they could do. I was given the complaints number. They were 'just following the rules.'

Anyone who knows me would say I'm a determined advocate for patients. After 6 phone calls I was eventually told I could get a copy from the Department of Work and Pensions. They're apparently happy to issue copies. I rang them. They denied ever doing that, until after another 3 calls a kind lady agreed to send one to the patient, for me to send to the council. I'm currently waiting for the post.

I've learnt a lot. Patients describe similar experiences regularly. This is just one example. Their lives are complicated enough. Where we can, we should make it simple.

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.