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Outcomes

What we looked at

7.1  Does the platform let you state what you want/need to happen as a result of sharing your information, specifically including reasonable adjustments and other actionable support needs? Do you feel confident that your needs will be met as a result of using the platform? 


7.2  How trustworthy does the platform/process feel? How is this trust created, both for the person and for recipients? How can you be confident that there won't be unexpected and unintended negative consequences of making the notification?

What good could look like
An approach which...

Lets you share your actionable support needs clearly, in enough detail but without asking for too much, and which gives you trust and confidence that those needs will be met by any organisation or service you need to interact with.

What's happening at the moment?

Average rating

Good practice
Poor practice

About Me, the Experian Support Hub, Hidden Disabilities Sunflower, This is Me and Wel-co.me all perform strongly here. Between them they set an excellent benchmark for capturing support needs at a level of detail that is actually actionable. These five, along with the JAM Card and Life Ledger, emerge as the most inherently trustworthy platforms.

The Vulnerability Services Register misses the mark in both respects. Its list of support needs, while it may be actionable, is too inaccessible for people to find the options they may need; its lack of transparency and nebulous reach reduce its trustworthiness.

7.1
ASNs

Excellent, but would benefit from a parallel record (e.g. AIS) to provide a structured/coded record of ASNs. This could be triggered by something shared under "How I communicate and how to communicate with me".

Excellent, provided the professional recording it captures the person's ASNs as they express them. There's anecdotal evidence that some health staff may record ASNs based on clinical diagnosis - this is contrary to the Equality Act.

A very thorough list of ASNs within its primary area of focus (the workplace and further/higher education), which is a useful complement to other ASN lists.

DNS will work for you if you know which bank(s) you need to contact and if they happen to subscribe. However, there are several points where it says you'll need to contact the receiving bank before using the form, or they'll contact you - at least this is spelt out, but it suggests that the notification service doesn't cover all eventualities. One example might be verification of the death - gov.uk notifications don't require you to send death certificates, so could DNS not offer the same?

A good broad range of options available to select, and you don't have to go through any kind of "condition filter" to access them - they focus on what you need, not why you need it. However, if your specific ASNs aren't listed there's no way of sharing them due to lack of free text option.

List of ASNs is good but slightly less comprehensive than others and is focused on F2F experience. It may not give the coverage someone would need about how to communicate by phone or in writing.

A very short list of conditions, and just one reasonable adjustment need: "‘Just. A. Minute’ and ‘Please be patient…’

Good for notifications of death; excellent for gathering all your own information together prior to death; a thoughtful touch in asking if the new holder of a utilities account (after bereavement) wants to join the PSR.

However, there's scope for it to do much more. Ironically the platform's strengths highlight its future potential - ideally you'd want it to capture your own and/or your executor/representative's ASNs, as well as LPA, ADRT etc.

Actionable support needs have to be inferred from the conditions/diagnoses selected, and focus closely on someone's likely needs at a live event. Most of the structured options (except "Anything else") relate to physical disabilities and sensory impairments in the context of a live event/venue. Platform would be extremely useful in these situations but of limited value in others.

N/A - not intended for this purpose

A fair list of ASNs covering many of the most common assistance needs on public transport, but nothing specific reflecting the needs of passengers with non-visible disabilities, e.g. request for quiet coach

Picklist includes a mix of conditions and actionable needs, and won't necessarily allow someone to capture a specific need around (e.g.) comms or mental capacity.

Likely to capture some ASNs but not all

Positive score for options available, reduced due to the barriers to accessing those options. However, choices available under mental health needs are extremely poor and do not reflect the actual ASNs of people experiencing mental health difficulties.

List of ASNs appears to be thorough without being over-complicated. However, it's all focused on F2F experience, and may not give the coverage someone would need about how to communicate by phone or in writing (e.g. when booking a visit).

7.2
Trustworthiness

Trustworthy based on design and intent.

Trustworthy based on design and intent. Possible reservations due to uncertainty over REACH.

Appears trustworthy provided the right organisations subscribe

Giving it a 4 for the clarity about how data will be used - ONLY to provide the support/reasonable adjustments that are requested

Trustworthiness reinforced by clear messaging around the information you provide being treated with discretion and respect.

Transparency engenders trust.

Process seems as trustworthy as the overall platform - would require the person to trust the platform enough to access and use it.

Trustworthiness score reflects my one personal experience of using it - assistance was requested and confirmed but never materialised.

It feels trustworthy, except that the privacy notice is a generic one about all your information and doesn't make any specific reference to how the PSR data will be handled.

Trustworthy based on intent

'- Breadth of subscribers may be offputting to some users.
- Privacy notice is fairly generic in respect of who receives data and what they use it for.
- Little or no transparency

Gives a feeling of confidence. Privacy notice is in very clear English, which contributes to this.

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