Ashya King - Did NHS bullying impinge on patient choice?

In 2014 Ashya King hit the headlines when his family were denied the opportunity to seek more advanced treatment outside the NHS. He was due to receive chemotherapy and radiotherapy for a brain tumour on the NHS, but his parents indicated their desire to take Ashya abroad to receive more advanced proton beam therapy, something which has been available in many countries outside the UK for some years. NHS doctors refused to enter into the conversation leaving the family with few options and so they fled the country.

Around this case were various claims by the NHS and the police which didn’t ring true. Indeed even today many questions remain unanswered and those responsible have not been held to account.

As the case unfolded the media put out various statements and photographs, “collaborating” closely with Hampshire police operating primarily on information fed to them by the NHS.

At the time much of the media attention focused on the threat to life and the inability of the family to sustain Aysha’s care. In particular, a number of articles focused on the feeding device batteries citing  Ian Pople (a consultant neurologist) as their source where he claimed:

• Batteries in the feeding device could not easily be changed 
• The device had to be taken apart to change the batteries. 
• It was not designed to be run on batteries and should only be used for short periods of time.

Immediately alarm bells rang, not just for Ashya’s safety but also the quality of the information being put out by the media and failure to fact check. For example, why would a routine piece of equipment used in healthcare be so complicated to maintain? It is conceivable it is designed to run mainly when connected to a mains power supply, but then why would the power supply for such a basic bit of equipment be so unusual?

Introducing Nutricia Flocar Infinity

From various photos published in the media including those released by Hampshire Police it was clear the feeding device being used was the distinctive Nutricia Flocare Infinity.

Photo of device issued by Hampshire Police

On their website, Nutricia says: “Nutricia’s Flocare range of innovative medical devices, accessories and supporting tools have been developed to simplify enteral feeding because Nutricia strongly believe that your feeding regimen should fit comfortably into your daily routine”

A brief google quickly shows that documentation is very easy to obtain including technical, clinician and patient information. A range of supporting resources exist including quick start guides, pictorial step-by-step, online videos and even an online simulator.

You only have to scratch the surface to understand the purpose of the product :

“The Infinity pump is small and portable, enabling you to participate in physical activity or
going out, without being held back by your feeding pump.__”

Clearly, this is a device whose aim is to be easy to use on the go to allow patients to go about their daily life.

Digging a little deeper manufacturer documentation states that the pump is equipped with an internal rechargeable Lithium-ion battery ( 3.6 V DC, 2000 mAh), similar to the type you find in many mobile devices. As with most phones today it is not designed to be replaced by the end user but is easily charged.

The charger is a standard unit accepting 100-240V AC / 50-60 Hz compatible with UK and European voltages and has a modest output  2.4 amps at 5 volts DC. In other words, it is a low power device drawing a similar current to a phone charger.

When fully charged the battery life is 24 hours at 125ml/hr and takes approximately 6 hours to fully recharge.

As a device designed to enable individuals to live as normal life as possible, there are straightforward information/training resources to allow patients / their families to easily maintain the device.

It is also very easy to obtain chargers, consumables and feeding packs for this device.

Indeed Asha King’s brother was on social media campaigning at the time and produced a video on how the family had equipped themselves for their journey despite the failure of the NHS to support them.

Please note this is a repost of the video as the original
posting from the time is no longer available.

Given all this readily available information and that this device is used routinely in the NHS how did Ian Pople and the wider NHS get such basic facts so wrong? They seemed to be deliberately misleading or grossly ill-informed about the device.

Caught up in a power struggle

Ashya King’s father published a video describing his experiences of trying to discuss Ashya’s treatment with the NHS. He talks about being ignored and even threated if he tried to challenge the NHS, describing them as “cruel”.

It’s not the first time such a power struggle has broken out within the NHS, indeed there are egos and clinical departments at war with each other within NHS organisations. Bullying is acknowledged as a systemic problem which will inevitably spill over into patient care.

The government has previously gone as far to declare that it is engaged in a “full-scale battle” on the public services and that it was determined to win, authorising hospitals to take “robust” approach to patients’ complaints, including the discussion of information about their condition and treatment.

Worrying, to say the least.

Some 5 years later 

In hindsight, it has been acknowledged in many quarters that police and prosecutors acted only on the information they were fed by doctors which were found to be inaccurate.

The most concerning aspect about this case is how the establishment responded and the media set about creating sensational headlines without even the most basic of fact-checking, let alone investigative work of their own to represent the case factually and from both sides, despite the publicly available information.

Over 10 years after many other health economies have adopted proton beam therapy, it finally arrived in the NHS. The public relations machine went into action marvelling at this wonderful NHS achievement, but for many, it was a bitter reminder of how long they had waited and how they had struggled and even been denied more advanced treatment.

While it is important to recognise the achievements of the NHS, it is not the be-all and end-all of healthcare services and it often lags many years behind others. As such universal healthcare should be about providing equitable access to services which uphold the rights of individuals and provide transparency, flexibility and choice.

Indeed the 2011 EU Cross Border care directive aims to improve the ability for individuals to travel making it easier to access  :  

• Alternative healthcare options, and/or specialised treatment abroad.
• The provisions strike the right balance between maintaining the sustainability of health systems while protecting patients’ right to seek treatment outside their home country.

Conclusion

There is no doubt that the King’s were forced into an impossible yet entirely avoidable situation by the NHS. Left with little choice they took matters into their hands, and there will have been some who had legitimate concerns about the welfare of Ashya.

It seems entirely likely that the same domineering culture fueling bullying in the NHS reared it’s ugly head, spilling over into patient care, preventing sensible dialogue, escalating matters and ultimately impinging on the freedoms of individuals and their families.

Patients who seek treatments overseas should be free to make such choices and supported by the NHS, not be discriminated against, let alone subjected to bullying or witch hunts.

Useful links and references

• Nutricia Flocare® website
  https://www.nutriciaflocare.com/
• Ashya King case shows how parents can be let down by the law
  https://www.theguardian.com/law/2014/sep/04/ashya-king-case-parents-let-down-law
• EU Cross Border Care directive.
  https://ec.europa.eu/health/cross_border_care/overview_en
• Ashya King: Missing boy’s ’life is in danger’
  https://www.bbc.co.uk/news/uk-england-28978655
• The union for health and care managers
  https://www.miphealth.org.uk/home/advice-information/bullying-harassment.aspx