Half-seeking Public and Patient Voice representatives?

Just before New Year a tweet half-caught my eye. This one:

Having lived and breathed #JusticeforLB over the previous 12 months, including being family representative on not one, but two independent investigations, this was interesting.

I’d already promised myself that I had to get back to working more in 2016. I’ve been working for myself for just under three years now, the first was a huge success financially (albeit I was probably half frightened to say no to anything and worked my socks off/far too much), the second was a much better balance (financial and life wise), the third was a bit of a financial disaster (probably a post for another day, and don’t get me wrong I’ve earned enough to live, and felt like I’ve done more of use than I’ve done in many a year, but in terms of developing my business forget it). So 2016 is going to see me more selective and more applied (watch this space).

So I had a quick look at the attached link. It’s no longer available, although there is a cached version of the application pack here. The advert was loosely based around the following:

NHS England is looking to appoint four Patient and Public Voice (PPV) representatives, including a Co-Chair, for its newly formed Independent Investigations Governance Committee (IIGC). The PPV Co-Chair is a partnership with the Co-Chair from NHS England, currently the Deputy Director of Nursing.

The committee will provide national governance and accountability for Independent Investigations commissioned across NHS England and ensure national recommendations and any associated national actions from mental health homicides are followed up. The IIGC takes a national perspective and has an overview of the four regional Independent Investigation Teams of the NHS covering London, Midlands and East, North and South.

The committee meets four times a year and takes place in London.

So, the role is about providing different perspectives (check), views (check) and challenge (check). More to the point most of the paperwork talks about independent investigations following homicide, but given LB’s entirely preventable death was due to neglect in Southern Health learning disability services I thought I might have a useful and less common perspective to offer. This all sounded great.

So what is the exact responsibilities of these roles?

Ensure that the committee considers and prioritises the service user, patient, carer and family perspective Not easy but possible, I’d only have one family’s experience but I’ve reasonably well developed networks and I’m not afraid to speak up when I feel groups or perspectives are being overlooked

Champion the diversity of PPV views (not just to represent their own experience) See above

Provide some ‘critical friend’ challenge into the committee, as appropriate To be honest this sort of sounds like the last two points but yes, no problem, happy to challenge as appropriate (or when I feel necessary) and even prepared to do it in ways that those in the system are most comfortable with, if that will progress things

Champion and advocate for increasing patient and public awareness of the programme’s outcomes and achievements This is intriguing given all the work we’ve done with the #JusticeforLB campaign! It has never been patients or the public who aren’t aware or interested in outcomes, so much as those with power/in control/in some way responsible for ensuring accountability. Still I feel confident it would be easy to advocate for independent investigations done well.

Review and comment on documentation Yup, done many times, in many roles. Would even offer challenge when it felt like documentation was becoming the focus or currency, rather than the end goal of an investigation (to establish facts and learning).

Comply with the Standards of Conduct, respecting the confidential nature of discussions when it is made clear by the Chair that this is a requirement Absolutely, except given who I am they’d get confidentiality when required, and awareness raising when not. A commitment to transparency and openness runs through me like a stick of rock, so would hope I could add something here.

So, what skills do NHS England say are required?

  • An understanding or appreciation of the impact of independent investigations for all involved including the needs of families who have experienced traumatic bereavement and those that are focused on mental health homicides.
  • The ability to act professionally and with sensitivity, whilst also being able to actively participate in discussions and review of information of a highly distressing / sensitive nature.
  • Experience of speaking in large groups and/or chairing meetings, and of interacting with multiple stakeholders at senior management level.
  • Experience of representing a patient / carer / citizen voice on formal committees and / or as part of high-level programmes.
  • Ability to understand and evaluate a range of information and evidence.
  • Experience of working in partnership with healthcare organisations and / or programmes.
  • Ability to display sound judgement and objectivity.
  • Have an awareness of, and commitment to, equality and diversity.
  • Understand the need for confidentiality.
  • A commitment to the ‘7 principles of public life’ (sometimes known as the ‘Nolan Principles’, which are: Selflessness, Integrity, Objectivity, Accountability, Openness, Honesty, Leadership).

Yup, without boring you all with my CV I am confident that I have most of these skills and would be interested in developing them further. I’ve worked in partnership with a whole range of people before; sat on formal committees and high-level programmes; know about health and social care. While I struggle to imagine that the information shared would be more distressing and sensitive than some of what I’ve seen with regards to LB’s life and death, I am prepared for that. I’ve lots of experience of public speaking, facilitating and chairing; alongside experience of managing and leading. I’ll be honest, at times I question my sound judgement, like why we trusted in the leadership of the health service to hold failings of leadership to account, but, and this is a big but, this role is about co-production and ensuring we do better so that isn’t a major worry. Equality, diversity and confidentiality… tick. Nolan principles – wasn’t aware they were still relevant to investigations, but yes, I think they’re pretty much how I try to live my life.

I’m not for one minute trying to infer I would be an ideal candidate, or that I would have stood a chance amidst the many people that would no doubt apply for such a role. Instead I want to share/vent/reflect on why I didn’t feel I could apply for it.

The reward for these roles is as follows:

You will be required to attend meetings approximately every 3 months. Meetings will normally be based in London, last for 2 hours, with some additional preparation time, for example, reading and commenting on papers. 

Expenses usually cover travel, accommodation and/or any subsistence requirements that arise. PPV partners should highlight any barriers to participation, for example, the costs of a carer that may need to accompany a PPV representative. An honorarium of £150.00 will be paid to each PPV representative for each of the quarterly meetings attended. These payments have to be declared to HMRC and the Job Centre. This may affect receipt of state benefits or insurance policies. There is always the option of no payment or part payment if necessary, dependent on your payment limits.

I am self-employed and don’t have to worry about the impact this work might have on my benefits or insurance so would just have to treat it as any other income and put it through my books. However, there’s a bit of a problem here, as outlined by Dan Beale-Cocks. If NHS England are looking for public and patient representatives and wish to truly give access to a wide range of people, then their approach to advertising these posts provides the first hurdle. Given the timescales it would be impossible for anyone claiming Employment and Support Allowance to apply, because they have to request permission to apply. Read Dan’s post here, he knows more about it than me. Seems somewhat ‘unfortunate’ (see I can speak NHS speak).

Of course NHS England generously suggest that people could volunteer their time for this, accepting a reduced payment or no payment if necessary. Something that I imagine most people would laugh at. I’ve spent many, many hours working for free over the last couple years (in fact over most of my career because I’ve never been great at getting a work/life balance, and when you work on things that matter, as I mostly have, it’s hard to hold back) however the idea that the public patient voice reps should go without pay, when none of the professionals who make up the rest of that Board will, is naive at best and part of the problem at worst. It’s incredibly difficult (possibly impossible) for those without a professional stake to hold those with them to account… just look at #JusticeforLB, talk to any parent or carer of someone needing support, the power dynamics at play are rife and to suggest that parity and equity can be established by those representing the most vulnerable stakeholder doing it for free is somewhat odd.

Anyhow, I can receive the £150 honorarium so what am I complaining about. This. One meeting every 3 months. To do this role I think I’d need to do this for each meeting:

  • prepare in advance, read papers, spend some time thinking, make notes, talk to others with experience and formulate input (2.5 hours at an absolute minimum, realistically much more, especially with the thinking time)
  • book train tickets, arrange for other commitments to be covered, maybe liaise with a few clients to rearrange or reschedule things, send a few emails (30mins or so)
  • travel to the train station (30mins), travel to London (3 hours depending on trains, this is an average not accounting for any delays, ha ha ha ha), travel across London on the tube to wherever the meeting will be held (c 30mins), allow an hour for contingency (after doing this trip on and off for the past decade this is the absolute minimum I’d allow for any meeting), two hour meeting (assuming that runs to time), tube/train/station to home return (4hours – no contingency this time because I’d suck it up on the way home)
  • follow up after the meeting, reflecting, thinking, emails, records, feed back to others (let’s say an hour per meeting)
  • complete expenses claim forms, send them in, possibly involving a walk to the post office to send hard copy receipts, no doubt chase them a few weeks later, then once the payment cheque (don’t ask I’ve no idea why its always a cheque in 2016 but it is) arrives walk to town again to pay the cheque in (90mins minimum)
  • discussions by phonecall or email with other committee members in between meetings, it’s a new committee but lets hope there aren’t too many, maybe we’ll allow an hour a month, this would include liaising with support staff around future meetings dates and booking phonecalls etc, because in my experience that is never straight forward.

This list does not include any allowances for any miscellaneous requests or contacts that arise, for discussion on social media or by email with any other patients or public members. It also does not try to compensate for the opportunity cost on any dependents or family members that people may support, not a huge issue for myself but I don’t understand why people should need to declare those support needs at the time of applying, surely they should be considered as a reasonable adjustment once someone is appointed?

Anyhow that works out as a time commitment of 19.5 hours per meeting, absolute bare minimum. Let’s assume I’m going to earn my tax allowance this year, we’ll be optimistic, that means I’d pay 20% tax on the £150 honorarium, so there’s £120 left. I then should probably allow something for national insurance contributions, sick pay, holiday pay, pension, any other jazz but we’ll stick with £120.

I’m sure you know where I’m going by now. 19.5hours, £120, that’s a grand total of £6.15 per hour. Don’t forget that the minimum wage at 21 is £6.50 and a living wage outside London is considered to be £7.85. It would appear that NHS England are effectively asking people to gift their time to provide challenge, input and expertise. If they are serious about public and patient involvement then I think it’s time for a rethink.

NHS England is committed to ensuring that public and patient voices are at the centre of shaping our healthcare services.  Every level of our commissioning system needs to be informed by insightful methods of listening to those who use and care about our services. Their views should inform service development.

I don’t know many experts who would be prepared to work for £150 a day and I don’t think I know any who would do it for £6.15 an hour.

ps I know that some people reading this will be quick to point out that the £150 is only a recent development, isn’t common practice and that I’m expecting too much. Just because an organisation has made a step in the right direction, doesn’t mean they don’t have much further to go. I don’t buy the argument that we should be grateful, I doubt many NHS employees would either if their wages weren’t paid each month and instead they were told they should be grateful.

pps I have been musing on this post since I saw the advertisement and wanted to wait until the deadline had passed to post it (so I couldn’t be accused of unduly influencing people more generous than myself who may have felt they wanted to apply). I’ve done that, but when the story broke last week that CQC Experts by Experience were having their pay rate halved to £8 an hour I felt like I needed to write something. There’s more to this story, CQC have outsourced Experts contracts etc etc.

The fact of the matter is that when I found out that expertise was being rewarded with £15 an hour I felt like I had to write anyway. Expertise is, by definition, not easy to acquire. It refers to great knowledge and experience. It is precious and should be valued as such. Experts by experience of the health and social care systems have in some cases endured a lot to achieve that status. Some of it good, some less so.

If we’re serious about coproduction and ensuring that experts by experience, the public and patient voices are at the centre of shaping services, then it’s time someone started providing them with the reward and recognition appropriate to that.

2 comments on “Half-seeking Public and Patient Voice representatives?”

John Lish says:

Actually there is one important thing missing from this analysis which is the additional personal costs incurred by the disabled person.

Speaking personally, when I was a part of the Kings Fund, I needed to commit at least 24 hours either side of the day’s meeting for travel and recovery. At least with the KF, they would put me up in central London as part of my expenses the night before.

If we are to be serious about disabled people’s involvement in engagement such as this then compensating the full costs of commitment needs to be recognised.

Even if we had a supportive benefits systems that allow disabled people to receive the £150 renumeration, it wouldn’t compensate for the additional costs incurred. Therefore this seems exclusionary by degree of disability as well.

Good article.

Tina Coldham says:

I too was interested when seeing this advert for these posts. I also am self employed and do a variety of work, which pays the bills, keeps my interest and suits my need to manage my own mental health. As someone who has been involved in many independent investigations, I know the level of detail that has to be gone into; the care and sensitivity needed when dealing with the loved ones of those involved – victim(s) and perpetrator included; the multi agency knowledge and input often required when trying to understand the care and treatment of the involved; and the need to look after oneself when reading harrowing details of the actual act and subsequent ‘fallout’ affecting staff and ordinary folk alike. There are many times when I look towards other developmental and innovative work I do as a way to balance any distress I feel but also the dismay at a system that doesn’t appear to learn lessons. After all, with investigations, although interesting, we are often bolting the door to the already shut stables after the horse has bolted. Action plans and learnt lessons abound – ref #JusticeforLB. Yet, services often repeat the same mistakes in how they operate…

Whilst the PPV reps for this role advertised wouldn’t have to delve into the detail of cases, they would benefit from a good background in this area as evidenced by the very first skill required (as stated above) and be able to deal with an amount of paperwork on this I would presume, whilst also being able to see the bigger picture of service land and public expectation on a hot topic which often makes the front pages. As such £150 a ‘day’ doesn’t cut it.

George rightly points out the dilemma for those of us living in the sticks but working ‘in town’ (London) often trying to do national work. Travel time isn’t compensated for and you often spend more time travelling than in the meeting itself. One hopes that you can get a seat on the train – often not on SW trains – so you can use the time to work like catching up on emails. However, you can’t read sensitive papers in public, so any prep reading fir this sort of work is out.

The daily rate of pay for PPI appears to have been capped at £150 based on good practice set out by Involve for meeting fees. See http://www.invo.org.uk/resource-centre/payment-and-recognition-for-public-involvement/ However, previous work on PPI payments, and indeed Involve state that above this, people should be paid consultancy rates for demanding roles or in recognition of particular skills. I’m not seeing this happen in service land, and indeed as the recent CQC EbE experience shows, pay rates can plummet quicker than a trust CEOs heart drops at the sight of a TV van outside their office window!

So, one chooses not to be involved in this type of PPI and work for those who pay better (if you can find them), or indeed work for those user led orgs who can’t afford to pay well but value your input such that the heart felt cup of tea they make you is all the payment you need. However, the latter doesn’t pay the household bills…

One hopes that any organisation that requires ‘champions’, they would actually pay a champions rate of pay. I’m not holding my breath though…

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