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Cancer patient experience: inequalities in care

This week we published the results of the 2015 National Cancer Patient Experience Survey, www.ncpes.co.uk.  At a national level, the results are positive (on a scale of 0 to 10, the average rating from patients of their overall care is 8.7).  But as in previous years there are areas where experience is less good (for example, only 55% of patients say they were given information about financial support; and only 33% were given a care plan).

For the first time, we conducted exactly the same survey in Scotland, and the results were also published this week, http://www.gov.scot/Topics/Statistics/Browse/Health/cancersurvey.  They are remarkably similar (exactly the same score on the overall experience question, for example).  But there are also interesting differences in some areas: @_RoseGray at Cancer Research UK has written a great blog on this, http://scienceblog.cancerresearchuk.org/2016/06/08/cancer-care-in-england-and-scotland-what-do-patients-really-think/.

But underneath the headline national figures, there are some fascinating insights into the experiences of different groups of cancer patients, as we have seen in previous years.

Men and women report quite different experiences of the care.  Of the 50 questions in the survey, there are statistically significant differences on 37.  And on 30 of these it is men who report a more positive experience – by a large margin in some cases.  For example, nearly 10% more men than women report that they were asked what name they prefer to be called by when they were in hospital.

Looking across age groups, there are significant differences too – in this case, on every single question in the survey.  The youngest age group (16-24 year olds) report the most positive experience on 14 questions.  But it’s the older age groups (65+) who appear most satisfied, with the most positive scores on 35 of the questions overall.

Different ethnic groups report different experiences of cancer care as well.  White patients are significantly more positive about their care on 36 questions out of 50; black patients on 5 (including being invited to take part in cancer research); and Asian patients on only 2 (including being given a care plan).

Deprivation too, appears to play a part.  And it’s at the extremes where the most positive impacts seem to be.  Patients in the most deprived areas report a significantly more positive experience on 10 questions; those in the least deprived areas on 22; whereas those in the middle report the least positive experiences throughout.

And some of the most striking differences are between the experiences of patients with different cancers.  We’ve analysed this looking at thirteen groups of tumours.  Again, there are significant differences on every single question.  Skin cancer, and breast cancer, are the two groups with the most positive scores; urological, and brain, have the least.  And there are fascinating differences on individual questions too.

Lots of detail to be explored in the results overall, then.  And a huge amount of useful analysis that commissioners and providers of care can do – as well as the individual cancer charities and patient organisations that I know are already looking at the detailed figures.

 

On 5th July, there’ll be even more useful data available, when we publish all of these results at CCG- and Trust-level too.  Watch this space, www.ncpes.co.uk.

World Cancer Day 2016

Today is World Cancer Day.  There is a great deal in the news about the state of cancer care and treatment across the world.  Some of the English press are focusing on the latest cancer death rate statistics, which show a drop in the percentage of people dying from cancer.  But the actual numbers of people being diagnosed – and dying – are growing.  And so are the numbers of people living – often for many years – with the disease.

This is why it is so important to understand patients’ experience throughout all stages of their cancer journey: diagnosis, treatment, recovery, and death.  Quality Health has run some large scale cancer surveys (in England, Scotland, Wales, and Northern Ireland) over the last few years that provide important data about some aspects of this.  Most cancer patients have a positive experience of care; most speak highly of the staff treating them; and most are given good information about their condition, treatment and side effects.  But there are still big variations between hospitals, and between different types of cancer.

We also work for a large number of smaller organisations – often in the voluntary sector – who specialise in particular aspects of cancer research and cancer care.  And I’ve been particularly struck by the passion and dedication of so many in these organisations who I’ve met over the last year.  The Clinical Nurse Specialists at Ashgate Hospicecare in Chesterfield, who provide such a crucial service for cancer patients in their area (and we know from our surveys that having a named CNS is the single most important driver of positive patient experience).  The team at Breast Cancer Care, who are working so hard to understand the particular drivers of patient experience for women with secondary breast cancer.  Myeloma UK, trying to understand more about the particular needs and treatment for the 15,000 in the UK with this disease.  Jo’s Cervical Cancer Trust, who are running a series of in-depth interviews with women to understand their experience of diagnosis, treatment and emotional support.  The LGBT Forum, investigating the particular issues for cancer patients from non-heterosexual groups.  The Teenage Cancer Trust, running amazing conferences for children from around the country to share their experiences of dealing with cancer at such a young age.  And Cancer52, the umbrella body who have become such a powerful voice for the dozens of very small charities and patient groups that focus on rarer cancers.

This is really important work, and I’m really proud that Quality Health is able to support it.  It directly affects the lives of hundreds of thousands of cancer patients every day.  And the numbers will only increase.

How technology is changing our business

We’ve launched our new website this week, using a new and improved platform – that looks lots better than before, has more (and better organised) information, and is much more straightforward for us to use and update.  Hopefully more straightforward for the user too.  Another example of how technology is moving forwards, and making life easier all the time.

That’s made me reflect on how technology affects our business too.

Virtually every aspect of our work has fundamentally changed over the last few years because of technology.  We send out well over a million questionnaires every year, and for all survey programmes, questionnaires, letters, language leaflets and reminders are all automatically collated, enveloped and sent out using specially designed and programmed inserting machinery.  Very little human intervention is needed apart from programming the computers (gone are the days of having teams of people spending days at a time stuffing envelopes…).

Questionnaires have QR codes that enable our scanners to read them when they’re returned, so that we know who’s replied – and so that our machines can automatically send out reminders to those who haven’t.  Our scanning software also ‘reads’ the data on questionnaires directly into our databases – and into our verification system, where our staff can check any inconsistencies and make corrections where necessary.

At the reporting end, much of the process of taking results from our databases into reports is automated. We still produce ‘static’ reports in word and powerpoint for clients who want them; but increasingly our clients prefer to view and analyse their own data (and produce their own reports) on our bespoke reporting and analysis portal, SOLAR.

Read more: How technology is changing our business

Listening to patients in Scotland

26 August, 2014

Quality Health has been working with the Scottish Government and NHS Scotland over the last few months, carrying out a comprehensive survey of inpatients in all Scottish hospitals.  It’s the fourth time this national survey has been carried out, and I’m delighted that the results show a continued improvement over previous years.

89% of patients gave a positive rating for the overall care and treatment they received (up from 85% in 2012).  88% gave a positive rating for the hospital and ward environment (a huge rise from 80% in 2012).  And 91% gave a positive rating for staff (up from 87% in 2012).  These are really encouraging scores.

Quality Health knows from previous work we have done that there is a correlation between particular elements of patient experience and positive clinical outcomes as measured through Patient Reported Outcome Measures (PROMs).  These are those elements relating to communication with doctors and nurses.  And so it’s particularly encouraging to see positive scores here too: 90% of patients thought doctors knew enough about their condition or treatment (87% for nurses); 90% felt that doctors talked to them in a way they could understand (84% for nurses); and 90% said that doctors and nurses listened to them if they had any questions or concerns.  Less positively, only 80% of patients said that a member staff properly explained the risks and benefits of their treatment to them beforehand; and only 59% said that they were involved as much as they wanted to be in decisions about their treatment and care.

Another interesting new question this year asked patients if they were given any information about how to provide feedback, or to complain.  Only 36% said that this was the case overall, although there was significant variation between health boards (from 30% in one to as high as 70% in another).  There is clearly some more work to be done in this area.

The full report is available via our website here:

http://www.scotland.gov.uk/Topics/Statistics/Browse/Health/InpatientSurvey/inpatients2014

 

Why can't the media focus on the positives?

11 September, 2013

It has been a year of awful newspaper stories about the NHS: poor-quality care; failing hospitals and failing inspectorates; a broken 111 system; overburdened A&E departments; and, as ever, dreadful hospital food.

One could easily conclude that the NHS should be avoided at all costs - although the Competition Commission now tells us to avoid alleged gross-overcharging in the private healthcare sector too.

Across many polls, the general public view is that the NHS is pretty poor, which is unsurprising, given the negative reporting. Conversely, when asked about their own care, the vast majority of us rate it as excellent - a pattern reproduced across much of the public sector.

So it’s great to see the results of the latest national Cancer Patient Experience Survey, published last week by NHS England - the third of these annual surveys, which gathers the views of nearly 100,000 cancer patients.

Read more: Why can't the media focus on the positives?

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