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Reach

What we looked at

5.1  Is the tool restricted to one sector/area of your experience, e.g. financial services/utilities or health/social care, or does it operate across sectors


5.2  Does your information reach the right people/services/contact points within the organisations that receive it? 


5.3  Does the platform let you share your information proactively when you come into contact with a new service/organisation?

What good could look like
An approach which...

Is genuinely universal, so you can share the information you need/want to share with any organisation/service you come into contact with. 


This includes organisations and services which have an ongoing relationship with you, but ideally the platform should also let you share information proactively when you have contact with a new organisation or service – ideally without the recipient having to subscribe to a service. This new contact may happen at a stressful time, so this capability would be particularly valuable.

What's happening at the moment?

Average rating

Good practice
Poor practice

We have not identified any platforms which come close to meeting this ambition – all are designed around the sectors they were developed by. 


The one that comes closest is the Hidden Disabilities Sunflower – as it’s a physical card/lanyard/app, it can be shown in any situation or environment. The JAM Card and Nimbus Access Card are also physical cards, though the information they offer is more limited. 


The Vulnerability Registration Service does reach beyond a single sector, ranging from financial services to local authorities, but it offers no certainty that it will reach the right teams/individuals within the receiving organisation – indeed, the evidence suggests that it is unlikely to do so.


Of the death notification platforms, Life Ledger outperforms the Death Notification Service, in that it reaches beyond the financial sector and includes utility/telecoms providers and others - to the point where it enables you to transfer a utilities account and ask to be included in the Priority Services Register.

“Poor practice” is a harsh phrase to use in this context, as there is so much good practice visible in the design of most of these platforms. However, they share a common characteristic in that they were all developed within a single (often quite broad) sector: • 


  • About Me, the Accessible Information Standard and This is Me focus only on health and social care. All three might be extremely valuable to (say) a social landlord, but this connection hasn’t yet been made at a system-wide level.

  • The Experian Support Hub, Notice of Correction and Priority Service Registers were designed by the financial services and/or utilities sectors, and don’t extend beyond these. 

  • There is a systemic weakness in Priority Services Registers, as although they are intended to share information with each other, they don't share it with the Priority Fault Registers operated by telecoms companies - perhaps because there are separate regulators for utilities and telecoms. The Digital Switchover in the telecoms sector exacerbates this, as telecoms are now dependent on an electricity supply.

  • The JAM Card, Nimbus Access Card and Wel-co.me are designed for retail, leisure, hospitality and live events. The Hidden Disabilities Sunflower also reaches into the public transport sector.


Ironically, the one platform which does evidence poor practice is the Vulnerability Registration Service: although it claims to operate across sectors, at best it offers little confidence that information will be shared with the right recipients, and at worst it’s misleading, and implies that your information will reach recipients who will never see it.

5.1
Multi-sector

PRSB have designed this for health and social care and don't believe it's appropriate to be shared beyond these functions. (Question: this info has come from the person, so why shouldn't they be able to share it more widely if they choose?)

Applies to health and care providers (though implementation by health and care providers is extremely limited), but not to others in the health and care ecosystem such as local authorities, nor to other services such as social housing.

"Multiple profiles: Create different settings for work, events, interviews, and more"

https://www.deathnotificationservice.co.uk/whoCanINotify.ofml lists subscribing institutions. Currently restricted to the financial services sector.

Relies on organisation to sign up. Nothing beyond banks, utilities and retail credit.

There is a mapping facility on the website (https://hdsunflower.com/uk/find-the-sunflower) to help you find sunflower-friendly locations - these appear to be mostly supermarkets, banks, hotels and a few leisure facilities.

A separate area of the website identifies 25 airlines and 35 UK airports which have joined the scheme, along with National Highways, whose patrol officers have been trained.

A page headed "Healthcare" names several vaccination centres which recognised the sunflower during Covid, but this represents a tiny minority of NHS face-to-face facilities. The fact that the page is written in the past tense suggests that the sunflower is no longer actively recognised by NHS services, which warrants further inverstigation beyond the scope of this review.

Some GB rail operators are involved in the scheme (e.g. GWR - see https://www.gwr.com/travel-information/passenger-assist) but are not listed on the website.

In theory, the JAM card can reach anywhere the person goes. JAM Card Friendly businesses appear largely to be clustered in Republic of Ireland/Northern Ireland. JAM cards for dementia/memory problems and heart/chest/stroke conditions are only available in NI.

Reaches over 1000 companies, but limited to financial services and utilities at present.

Designed specifically for live music/performance venues, and no opportunity provided to share info beyond this. Some evidence that non-subscribing venues may accept the Access Card at face value.

Separate NOCs required for each credit reference agency. Recipients largely limited to financial istitutions.

Limited to train operating companies (TOCs) and doesn't extend to other public transport providers. Not clear whether all TOCs participate.

Info only guaranteed to reach this one supplier, though they "share your data with the energy & water industry"

Designed for health and social care, but could hypothetically be shared with (e.g.) a landlord. Relies on the person sharing the information or the document accompanying the person into a new setting (e.g. hospital admission).

Multi-sectoral but relies on the organisation subscribing. Some local authorities subscribe, but it's unclear who in the authority would receive the information.

Extremely limited list of recipients (venues), but the opportunity to suggest new ones

5.2
Recipients

Systems may have capacity to store information (it's included in the Core Information Standard), but aren't routinely designed to highlight its existence to front line staff.

Standard requires information to be recorded in a structured format and flagged prominently, but no evidence that this is happening.

Strong likelihood info will reach the right people in recipient organisations

Relies on organisation to ensure information is visible to staff who need it. Given that suppliers actively subscribe to the service, and commit to its principles and ethos, there's a degree of likelihood that this will be happening.

Person is able to show the card to those who need to see it.

Person is able to show the card to those who need to see it.

Strong likelihood info will reach the right people in recipient organisations

Person is theoretically able to link their Access Card details to the venue's CMS, but no guarantee that information will be visible to ose who need it.

NoC is visible to anyone viewing the overall credit record

Relies on participating TOCs to ensure platform and on-train staff are aware - no evidence of how this is achieved, and no opportunity to test.

Relies on the supplier to ensure that information is visible to those who may need it.

Since it's a written document, there would be no automatic flag on someone's record to show that the information exists. Evidence from PFD reports suggests it's too easy to ignore information in these situations.

Unclear how far recipients share (e.g.) reasonable adjustment/communication needs within the organisation. For example: Hampshire County Council subscribes; the contact point given is for the Client Affairs team, who look after the financial affairs of people who lack mental capacity. Does HCC communicate ASNs to other teams across social care, TEC etc? Do they share comms needs with district/borough partners in respect of Council Tax, benefits, housing etc? (Almost certainly not, per the HCC Client Affairs team privacy notice.) Would someone sharing needs through the VRS understand which bit of HCC will receive and act on information? (I had to go digging)

Relies on the venue to ensure that information is visible to those who may need it.

5.3
Proactive sharing

The data standard doesn't exclude this, but there's no platform to enable it

Data is captured and held within NHS systems, and there's no means for the person to access or share it.

Recipients can be added to the notification within 90 days of first sending it - again, restricted to existing subscribers.

No provision

The card is designed for the person to use in any situation they want to

The card is designed for the person to use in any situation they want to

Can add new accounts/recipients with no time limit

The card shows high-level symbols for the person's needs, and could be used proactively if the person wished - though the underlying information

No provision

You can request assistance for a specific journey

Could be shared proactively.

Opportunity to suggest new venues to receive your information, but no opportunity to share your information proactively with them or others.

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