Blog
Apr 17, 2024

The worst day of my life; a seed of HelpFirst’s mission

My daughter’s critical needs got missed. HelpFirst is building technology to stop similar things happening again.

Andy Bell

April 17th 2009 was the worst day of my life.

After an agonisingly long labour, our daughter was born in severe distress. Half an hour later she was dead.

My wife had endured four and a half days of labour. The medical professionals counted it as two. Whatever, it was one hell of a long time. My wife was utterly exhausted. In the days between my wife's waters breaking and the emergency caesarean, our daughter contracted an infection that claimed her life.

The post mortem showed Selma was a healthy baby, apart from that minor infection. She should have survived.

If we had been given the caesarean a day early she would have survived. 12 hours earlier she would have survived. 6 hours earlier. 1 hour earlier is probably all that was needed.

I blame myself.  If only I hadn’t encouraged my wife to be brave. If only I hadn’t reassured her and said to trust the doctors. If only I’d encouraged her to trust her instinct and raise more concerns.

I blame the NHS. Our ward was too busy. Understaffed and overwhelmed. Everyone was frazzled. We didn’t get the care when we needed it. 

The UK has the highest rate of neonatal mortality in Western Europe: 2.8 per 1000 live births, compared to 1.8 in Spain or 2.2 in Germany. Our daughter was full-term and a good size. She was fundamentally healthy. The victim of an unnecessarily prolonged labour. She was probably one of the marginal cases. A baby that dies in the UK but that would have survived in Spain or Germany.

A few months after losing Selma, we were back in the hospital to discuss the post-mortem. I remember the senior consultant, a softly spoken Irish man. He was in tears as he talked us through the details. I think he knew how the system had failed us. 

But pursuing blame won’t bring Selma back.

At the time, I was working at Mint Digital, a startup studio. We had amazing times building frivolous products: our biggest success was an Instagram fridge magnet printing app. Losing Selma changed me. Tentatively, I searched for ways to use my skills for the broader good.

In 2019, with Noam Sohachevsky, we set up SIDE Labs. SIDE stood for Social Impact Digital Explorers. We built websites and apps for charities. We got to work with lots of inspiring people trying to improve the world. One frustration was we never got to go particularly deep. Real change requires more than a new website.

Now, at HelpFirst, we’re going much deeper. HelpFirst’s LLM-powered analysis supports care-giving organisations. It protects the organisation against the risk of a vulnerable client slipping through the net. It supports caseworkers by reducing the cognitive burden of case switching: we believe this will have a positive impact on burnout and staff churn. Most importantly, it cares for the vulnerable individual, ensuring they get the priority they need.

I’ve had a pretty fortunate life. But for those four days in April 2009, my daughter and wife and I were vulnerable. We were a terrified young family relying on the system. And the system failed us.

I wonder what would have happened if the NHS staff had had a technological safety net that flagged my wife as needing urgent attention. Could Selma be with us as a healthy teenager? She could have been celebrating her 15th birthday today. 

I’m not saying that I started HelpFirst because of the experience of losing Selma. It was probably buried too deep for me to make the connection. But now I’ve made the connection, it fires me up. Prioritising vulnerable people matters, whether in charities (where we initially operate) or social care or healthcare.  

Caring for the vulnerable is a core responsibility of society, and we can do better. Thanks to advances in AI, care-giving organisations can get much better at identifying and prioritising their most vulnerable clients.

Much discussion around AI focuses on the risks. But let’s also remember the potential. Intelligence is good. Abundant intelligence should be even better. There are plenty of areas where more intelligence, more consistently applied, could make a life-changing difference.  

The Priority Services Register (PSR) is a key tool that energy suppliers use to fulfil their responsibilities to vulnerable customers. But there isn't just one register. Every energy company has their own PSR and the application forms vary unpredictably from supplier to supplier. 

As part of our CivTech Challenge, we’ve been researching best practice across the industry. We were left with lots of questions:

  • Why is 'restricted hand movement' a vulnerability that almost all suppliers assess?
  • Why are archaic phrases like ‘bedridden’ used?
  • Why does only one supplier check if their vulnerable customers use ‘electric showering’? 

Alas, we weren't able to fully answer these questions. But here’s a visual guide to various PSR forms, so you can get an overview of the landscape.  

Overview

We accessed PSR application forms for Ovo Energy, British Gas, SSE, Octopus, EDF, Shell and Utilita. For many other suppliers, access is restricted.

The first observation is that the application forms are extremely varied: 

  • We’ve grouped questions into categories to make things a bit easier to read, however the forms themselves come in very different structures.  Some offer all their options in one long list, some separate into smaller sections.  Some only show certain sections once a customer has selected a particular option (e.g. selecting ‘sight loss’ gets you extra questions on the Shell application).
  • Several vulnerabilities are only mentioned by one supplier. Only one asks about autism, and another asks about breathing difficulties. The following options only showed up once: ‘female presence preferred’, ‘longer time to answer the door’ and ‘bedridden’.
  • For sensory needs: ‘blind’ and ‘partially sighted’ are separate options in all the forms. 'Hearing impairment' and 'deaf' are combined in half the forms and the former is not asked at all in one. This may be contentious, as hearing impairment and being deaf are very different conditions.
  • Some suppliers include options for accessible information provision in the same form (i.e. braille, large print letters, etc.) Others link to an additional form, or do not reference it at all.
  • When temporary conditions are mentioned, only some suppliers allow the customer to select a date when they believe the condition will no longer apply.
  • Most of the forms are multiple choice, limiting to what the supplier chooses to ask about.  Occasionally the supplier (e.g. EDF) gives the customer a larger space to talk about their conditions, equipment and needs in more detail.

Next, we dive deeper into the application forms.

Medical Conditions2

Question asked
Question asked (with variations)
Question not asked
Ovo
BG
SSE
Octopus
EDF
Utilita
Shell
Hearing
Speech impairment
Poor sense of smell/taste
Mental health
Dementia(s)/cognitive impairment
Non-English speaker
Chronic or serious illness
Partially sighted
Blind
Developmental condition
Restricted hand movement
Pensionable age
Physical impairment
Unable to answer door
Learning difficulties
Arthritis
Anxiety or depression
Heart condition
Dyslexia
Autism
Living alone
Bedridden
Breathing difficulties
Carer
75+
Receive disability benefits

EDF’s application form has the highest number of options related to medical conditions (20 in total) with British Gas and Utilita featuring the lowest (13).  EDF also features options which cover multiple medical conditions (e.g. 'breathing difficulties', 'disability benefits') more frequently than other suppliers. SSE has the highest number of options for learning and mental health related conditions (including 'dyslexia', 'autism', 'learning difficulties' and 'anxiety/depression').

There is some overlap within options, which could be confusing. For example, SSE lists both ‘developmental condition’ and ‘autism’ separately, even though the latter is a type of the former. Another example is the ‘mental ill health’ and ‘anxiety/depression’ options, again found in the SSE form. It is not clear if customers should tick both or only the more specific option.

All organisations feature options to indicate older age, however they specify a variety of different ages as the lower threshold, including:  60+, 65+, 'pensionable age' or 'pensioner'.  British Gas have two separate options relating to older age ('pensionable age (65 and over)' and 'age 75 and over').

There is some degree of consistency across organisations. This appears to be where specific conditions have been mentioned within the Ofgem guidance (for instance, 'restricted hand movement' appears in all but one form, in spite of the fact this is a very specific need).

Language Used

The language used across suppliers is very inconsistent. SSE uses ‘hard of hearing’ and ‘deaf’ to describe hearing loss-related needs, while other suppliers employ terms such as ‘hearing impairment’ or ‘hearing impaired’.

Some options have multiple potential meanings: ‘carer’ could refer to the respondent either needing a carer or being a carer for someone else.

All suppliers ask about speech and language difficulties and broader language barriers. However there is no shared way of asking whether a customer speaks English. Variations include: 'unable to communicate in English', 'language barrier' and 'foreign language speaker'.

‘Unable to communicate in English’ (used by Octopus and Ovo) is somewhat ambiguous. Customers might take it to mean having a different first language or having a speech condition. The requirements are quite different: with the former you could use an interpreter or multilingual support, with the latter you would need different support.

Medical Equipment3

Question asked
Question asked (with variations)
Question not asked
Ovo
BG
SSE
Octopus
EDF
Utilita
Shell
Stairlift/hoist/electric Bed
Heart/lung or ventilator machine
Dialysis, feeding pump automated medication
Nebuliser or apnoea monitor
Careline/telecare system
Medicine refridgeration
Water dependent
Medically dependent on showering/bathing
Oxygen concentrator
Oxygen use
MDE electric showering
Mains powered electric medical equip
Life support
Wheelchair user
Medical or other critical dependency

Options Offered

British Gas do not offer any specific options for types of medical equipment: they solely offer the generic category ‘mains powered electric medical equipment’.  All other organisations surveyed have more specific options.  These are broadly consistent across suppliers with some more limited options (e.g. ‘wheelchair’, ‘MDE electric showering’). 

Most organisations (bar British Gas and EDF) also ask about reliance on water.

Language Used

It is unclear what is meant by the ‘life support’ option used by EDF. Often the phrase ‘life support machine’ refers to a ventilator, but EDF also have a separate option for ‘heart and lung ventilators’. It could mean life support as a condition or set of needs but that seems too broad for the PSR.

Temporary Changes

In a rare show of unanimity, all suppliers offer the same options for temporary changes.

Question asked
Ovo
BG
SSE
Octopus
EDF
Utilita
Shell
Young adult
householder <18
Children age 5
and under
Temporary life change (bereavement/pregnancy)
Post hospital recovery

Other Questions

Question asked
Question not asked
Ovo
BG
SSE
Octopus
EDF
Utilita
Shell
Additional presence preferred
Nominee
Regular meter readings
Move meter to support access
Extra time to answer door
Female presence preferred
Duplicate bill to family
Power of attorney
Financial difficulties

Passwords 

All suppliers offered the option of setting up a password or PIN. This is usually so a technician can state this password as an additional security measure on home visits. Two suppliers required a 6-letter password, one an 8-letter password and one a 10-letter password.  A final supplier did not specify length.  An unfortunate side effect of this variation is that if an individual were to move supplier, they may need to change their password and remember a new one. (Note: not shown in an infographic.)

Life Scenarios

Varying from the multiple choice standard, Shell veer into first person narratives. In their ‘Nominee Scheme’ section of the form, they feature an additional tick box option: ‘I can be easily confused and worried by communications from my energy supplier’. When asking about meter support they offer: ‘I have a prepayment meter and no-one in my household is able to safely read it or top it up’.

Accessibility Information4

Question asked
Question asked (with variations)
Question not asked
Ovo
BG
SSE
Octopus
EDF
Utilita
Shell
Large print letter
Braille
Audio
Alternative language: please specify
Black and white letter
Letter
Colour contrast
Arial font
Large print letter in black and white

Organisations vary on including accessibility questions on their PSR form. Ovo offers seven different accessibility options for receiving information, while Shell offers a single broad range checkbox.

Conclusions

Suppliers diverge considerably in what information they collect on their customers to register them for Priority Services support.

On our travels we encountered the aspiration to create a more standardised or universal PSR. Initiatives like the Vulnerability Registration Service and Experian’s Support Hub aim in this direction. In the future we are keen to explore the user experience of these services and how they aid vulnerable customers.  

In the meantime, we hope this analysis will prove useful if you are looking to improve the experience of vulnerable energy customers. Any questions or comments, contact harriet@helpfirst.ai. We’d love to hear from you!

Footnotes
  1. SSE was acquired by Ovo Energy in 2020.  They hadn't completed their move over when we started this research and were still registering people to their PSR. We’ve included them in this analysis as their approach was interesting with many mental health and developmental condition-type questions.
  2. Some questions have been condensed in the infographics. Numbers referenced in the discussion refer to the full options as available on the questionnaires, but the infographics demonstrate a condensed version for brevity and ease of visualisation. Full original data is available on request.
  3. 'Heart/lung machine & ventilator' is the most common formulation of question regarding this equipment. However EDF separates these questions into: 'heart/lung machine' and 'ventilator'.
  4. Octopus and British Gas do not ask about accessibility. Shell only offers a general ‘accessible information’ needs tick box if the customer has earlier selected that they have a visual impairment. This does not mean they do not record this information elsewhere, where these questions did not appear on their forms we were not able to verify what (or if) they ask about accessible information.

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