NHS Forth Valley – unable to offer reassurance

There were a number of reasons why I left NHS Forth Valley. One of those reasons was a concern that patients, often elderly, were being harmed through the misdiagnosis of dementia.

Shortly after I left I wrote to senior management seeking the following reassurance:

  • that any patients that have been harmed are acknowledged and where appropriate supported in coming to terms with their mis-diagnosis,
  • that practice in NHS Forth Valley now follows Scottish, UK and International guidelines on Dementia.
  • that NHS Forth Valley has, as an organisation, reflected on this matter

Following a reminder I received a reply suggesting that examining comparative data would be helpful but would take some time:

Tracey Gillies 23-Feb-2015

Following another reminder I have now received what I take to be the final position of NHS Forth Valley on the matter. My understanding of this is that NHS Forth Valley cannot provide the reassurance that I was seeking:

Tracey Gillies 16-Mar-2016

Tracey Gillies 16-Mar-2016 Glasgow Declaration

I have sent the following letter to NHS Forth Valley which reiterates my ongoing concerns:

"I remain concerned about the potential for harm relating to the 
over-diagnosis of dementia. I understand that you are not in a 
position to reassure me on this in terms of patients referred to 
NHS Forth Valley. I would welcome it if this “could potentially be 
explored in the future.” 

I note and understand your general comments about reflection. 
The book “Intelligent Kindness”  considers the importance of reflection 
not just at an individual level but also at an organisational one.

I feel that it is now time to conclude our correspondence on this 
matter."

If anybody would wish to see the full context of the letters please contact me.

 

 

 

“This most unusual request”

In August 2013 I read an article published in the BMJ which was entitled Three quarters of guideline panellists have ties to the drug industry”.

Majority-of-Guideline-panel

I have petitioned the Scottish parliament for a Sunshine Act. My petition seeks a single, searchable register of payments made to healthcare workers and academics. My petition has now been considered 6 times by a parliamentary committee. The committee would appear to be coming to the view that such a register would need to have statutory underpinning (just as they have in France and the USA). However, before any decision is made by parliament, the Scottish Government have asked for wider public consultation.

Update, March 2016: 
The public consultation concluded, by majority, that it should be 
mandatory for all financial transactions to be publically declared.

Peter-Sunshine,-Jan-2015

The Scottish Government and the Cabinet Secretary for Health, Wellbeing and Sport, have made comment “that apart from the petitioner” the issue of transparency has not been raised by other NHS healthcare professionals. This brings me to this blog-post which might explain why this has been the case.

we-can-find-no-record

In an entirely anonymised way I shall briefly present the narrative behind a senior healthcare professional who served as a key individual in a panel developing a national guideline. Unfortunately no records of financial interests for this guideline exist and so, as part of my research for a Sunshine Act, I wrote politely to this senior healthcare professional asking for the details of any financial conflicts of interest. I was grateful to receive responses but unfortunately found that they were uninformative and defensive. It was however clear from research publications that this individual had received payments from the pharmaceutical industry.

HDL-62

In Scotland, all NHS Chief Executives were written to by the Scottish Government in 2003 asking that they established registers of interests for all employees including GPs. However, across Scotland, for more than 12 years, this guidance has not been followed. In the hope that this senior healthcare worker had declared to his employers, I wrote to the Health Board involved. In doing so they breached my polite request for anonymity. I asked the Health Board if they could forward the evidence of this senior healthcare worker’s declaration to his employers, as expected in HDL 62 and also for GMC Annual Appraisal.

After many months, I received a reply from the NHS Board. This is the relevant section of the reply which confirms there are no entries for this senior healthcare worker who was involved in developing a national guideline which advises on prescribing.

One a

The NHS Board reply encouraged me to consider confidentiality of this senior healthcare worker but made no apology for my anonymity being broken.

The final paragraph of the NHS Board reply apologised for the time taken to look into this but asked me to “appreciate that this is a most unusual request”.

One b

The GMC does not consider it “unusual” to maintain transparency regarding financial conflicts of interest:

GMC on CoI

My experience for researching whether GMC guidance and extant NHS Scotland guidance on transparency have been followed has been most difficult. It has had negative consequences for me and I have felt as if I have been regarded as “unusual” to be concerned about transparency. Robert Francis in his two recent reviews relating to the NHS has talked of ‘a culture of fear’ where healthcare workers are fearful of the consequences of putting patients first. Perhaps then, this is why, other healthcare workers have not raised concerns about transparency of payments made by industry to colleagues.

Freedom to speak up

It would appear from this example that it is possible that authors of prescribing guidelines may have previously been paid by industry. As things stand there is reasonable chance, as a Scottish patient, that the medication you receive has been informed by such a process. And you will have no way of finding out if this is the case.

Update, September 2016:

SIGN 86, Management of patients with Dementia, has now been withdrawn, 
so is historical. 

I therefore feel that it is entirely reasonable to identify it.

sign-86-guideline-chair-dr-peter-connelly-guideline-now-withdrawn

sign-86-guideline-healthcare-improvement-scotland

 

Dementia Strategy 2013-16 Proposition Paper

The Scottish Government: February 2013
The official paper can be accessed here: http://www.scotland.gov.uk/Topics/Health/Services/Mental-Health/Dementia/DSPropositionPaper2013-16

(text in BOLD as per official paper)

Introduction

  1. This paper sets out our proposals for the key themes and priorities that should underpin Scotland’s second National Dementia Strategy.
  2. The paper reflects the strong consensus we heard from the recent Dementia Dialogue process:
  • that we should consolidate and build upon the work taken forward since 2010;
  • that we should identify areas where extra support and leverage is needed to support service transformation; and
  •  that we should capitalise on new opportunities, for example through The Life Changes Trust.

Progress

  • This government made dementia a national priority in 2007, set a national target on improving diagnosis rates in 2008 and published an initial 3-year national strategy in 2010, underpinned by a rights-based approach to care, treatment and support. Our work over the last 3 years has been based on strong collaboration in developing and implementing the strategy in a coordinated way.
  • In 2011 we published the Standards of Care for Dementia in Scotland as well as the Promoting Excellence framework which supports the health and social services workforce to meet the standards.
  • The 3-year diagnosis target was achieved nationally and The UK Alzheimer Society’s second annual dementia map – published in January 2013 – shows that, up to March 2012, in Scotland around 64% of those with dementia were being diagnosed (contrasted with around 44% in England, 38% in Wales and 63% in Northern Ireland), using the Dementia UK prevalence model.
  • From April 2013, we introduce a HEAT target which guarantees that everyone newly diagnosed with dementia will be entitled to at least a year’s worth of post-diagnostic support, coordinated by a named link worker.
  • Since 2011 the Chief Nursing Officer has led an improvement programme with NHS Boards on the care of older people in hospitals. Alzheimer Scotland Dementia Nurse Consultants have been appointed to Boards across Scotland and 300 Dementia Champions will be in place by March.

Challenges

  • We need to do more to help services promote and deliver the high quality, compassionate, non-discriminatory care that people have the right to expect on every occasion.
  • While we have an improvement framework and capacity and capability in place we need to take more action to help lever and sustain change in services. This is necessary not only because of the need to improve outcomes and people’s experience of services but also because of the need to redesign services to support the increasing number of people with dementia.
  • We need to help local planning partners redesign care pathways to deliver better and more cost-effective care, including providing a range of improvement support and learning resources, such as the analysis of the resourcing of dementia services across Midlothian CHP.

Approach

  • We propose continuing our consensus-based, partnership approach to taking forward this work up to 2016, with the views and experience of people with dementia and their families and carers at the centre of our work.
  • The actions will be ambitious and measurable and we will focus attention on areas of dementia care where we can make the biggest impact. As in the first strategy, our aim is to make real improvements for people in the here and now in parallel with work to shape and drive the ongoing transformation of care for older people.

Themes

  • Continuing to focus on promoting and supporting early, accurate diagnosis of dementia.
  • Supporting a significant improvement in the quality and consistency of post-diagnostic support.
  • Engaging and involving people with dementia and their families and carers as equal partners in care throughout the journey of the illness.
  • Supporting people to live a good quality of life at home for as long as possible, as they move from self- management to needing more intensive community-based support.
  • Ensuring people get safe, appropriate and dignified care in hospital and in care homes on every occasion
  • Nurturing dementia-enabled and dementia-friendly local communities.

Priorities

  • Sustaining and improving further diagnosis rates, which may include developing an approach around routine testing.
  • Supporting the implementation of the post-diagnostic HEAT target.
  • Testing an approach to providing intensive support, based on Alzheimer Scotland’s 8 Pillars model, which is centred on a care coordinator role.
  • Implementing a Promoting Excellence training plan for the next 3 years, to embed, build on and extend the skills and competencies of staff across health and social services including the housing sector – and including increasing access to psychological therapies.
  • Developing an innovative digital platform for dementia, which could help inform and empower people with the illness and their families in being equal partners in care.
  • Implementing a package of improvement measures for dementia care in hospitals, which will involve maximising the impact of the Alzheimer Scotland Nurse Consultants and the Dementia Champions; and ensuring that people with dementia and their families are treated with dignity and respect as equal partners in care.
  • Assessing the need for improvement activity specifically around care homes, including staff training and supporting the implementation of the HEAT post-diagnostic target for people diagnosed in those settings.
  • Implementing a national commitment on the prescribing of psychoactive medications, as part of ensuring that such medication is used only where there is no appropriate alternative.
  • Publishing an initial report on implementation of the dementia standards; taking forward work to align them with the National Care Standards as part of their review process; and linking with further work to integrate inspections of services.
  • Working to embed outcomes for people with dementia in the outcomes framework which will support implementation of the integration of health and social care.
  • Working with The Life Changes Trust as they administer grants from this year for initiatives to benefit people with dementia and their families and carers, including initiatives around dementia-enabled and dementia-friendly communities, peer support and befriending, to ensure that this activity complements and supports the new HEAT target.
  • Continuing to support research through funding The Scottish Dementia Clinical Research Network and supporting the work of the new Scottish Dementia Research Consortium in its objective to bring together the range of dementia research interests in Scotland and maximise the impact of and funding opportunities for research capacity here.
  • Looking at the need for national action around linkages with other chronic conditions; and the need for national action around early onset dementia.
  • Exploring further opportunities to link with health improvement activity focussing on reducing the risk of developing dementia and enhancing the physical health and quality of life of people living with the illness.

Support

  1. Developing a National Improvement Programme for Dementia, drawing on the blend of improvement support skills in The Joint Improvement Team and The Scottish Government Quality and Efficiency Support Team utilised in the Dementia Demonstrator and post-diagnostic test sites work, with a number of key improvement objectives:-
  • Testing the Alzheimer Scotland 8 Pillars model for community-based support in 3 or 4 pilots, looking at different environments (urban; rural; island), but also within different hosting arrangements – primary care, local government, and including one integrated service.
  • Supporting delivery of the Post-Diagnostic HEAT target from April.
  • Testing initiatives around community capacity/coproduction and around primary care engagement
  1. Publishing the dementia benchmarking framework to enable services to compare performance around key indicators of improvement.

Next Steps

• This paper will form the basis of work by an expert group which will meet between March and May to finalise the strategy; and it will also be sent out to participants in the Dementia Dialogue for further comment.