If my beloved mum had lived beyond the age of sixty two, when an unstoppable cancer raced through her body in 6 months, she would have turned eighty today. I think about her a lot, and have done so for a strange reason in the lead up to the launch of the Benefits Advice Service for Involvement.
For many years, she worked with people with severe and enduring mental illness who wanted to re-enter the world of employment or training. Yet the benefits’ system conspired against them: essentially, if they earned a penny, they risked losing what was often quite literally their only source of food and a home. For those understandably cautious about their ability to work, but very keen to try, it was a grim Catch 22.
My mum, who was not naturally keen on numbers but cared a lot about people, became enmeshed in the complexities of the benefits system to try and break this deadlock. And the last 18 months have brought back clear memories of her frustration and determination up against the system’s inflexibility.
We’ve been ready to launch our patient and public (PPI) payment policy since summer 2013, but the notional earnings rule kept tripping us up. In brief, the rule can seriously imperil people’s benefits because if they are offered – and decline – payment for involvement, they are considered to have had an offer of work. Patients may want to help with research precisely because they are ill, and precisely because they are ill they are on benefits because unable to work. We offer payment, they say no, but still their benefits are at risk.
Some organisations already have well-used PPI payment policies, taking the view that the risk is not too serious, or that individuals can seek advice to keep them safe. My feeling has long been that while the notional earnings rule exists, I can’t take the risk on someone else’s behalf by offering them payment. Hence, however good the new advice service (and I’m sure it will be) we won’t launch our payment policy until April, when the last two benefits covered by the rule, cease to be.
By no means all who get involved in research want to be paid – a fact which has surprised me – their reasons range from not wanting to tackle the tax and other official complexities that accompany a new stream of income, to feeling that they have earned all their lives and now they want to volunteer.
And the debates around offering payment (as well as the complexities of benefit rules even once the notional earnings rule goes) are as varied as the reasons for accepting or declining it. Some say it helps broaden the pool of people who get involved and enables those who couldn’t afford to do it without payment to have their voices heard, others counter that it risks making patient and public involvement (PPI) appealing for the money alone.
On balance, it simply seems right to offer. As we say in our soon-to-launch policy “Just as the researchers, doctors or other professionals who work here are paid, so we offer involved patients/carers payment for their time spent on these tasks.”
The new INVOLVE service is thus a hugely reassuring presence for those trying to help patients, carers and others who want to help us, pick their way through a fearsomely complex benefits system. Getting to this stage has made me realise that I truly am my mother’s daughter: I know more about the benefits’ system than I ever wanted to, and it has been a sentimental journey.