When Baroness Tanni Grey-Thompson launched her campaign for improved wheelchair services at the end of June, it received some national media coverage but subsequently appeared to sink without trace, despite her call to support a new charter, led by the NHS England-funded Wheelchair Leadership Alliance, which she chairs.
The charter, ‘Right Chair. Right Time. Right Now.’ is designed to pressure health bosses, clinical commissioning groups and politicians into improving this much-criticised service with its ten-point plan to transform the lives of the 1.2 million wheelchair users in England alone, who receive inadequate support to get to work, or school, do the shopping, look after their children and do sport.
To the able-bodied, it comes as something of a surprise to learn that there is no national strategy or procurement policy to meet need, with every area operating differently, leading to millions of pounds being wasted because this vital aid to independence is so often inadequate, leaving wheelchair-users ‘immobilised, frustrated and ignored’. There is, apparently, ‘a great variation in ability to access assessment and obtain service provision, delays in equipment and repairs, poorly thought through provision plans and patient pathways, confusing information, restrictive and inflexible funding and minimal integration of services’.
As Baroness Grey-Thompson says, ‘if we could get even half the CCGs to be discussing wheelchair services at board level, that would lead to an improvement.’ She has also asked that strict standards for wheelchair services be included in the next NHS Mandate (the annual agreement describing what government expects from the NHS).
NHS England’s Director of Commissioning Operations said, ‘NHS England absolutely shares the ambition for wheelchair users and their families to be supported to lead full, independent and active lives…. We have set up a data collection mechanism on how many wheelchairs are provided, how much is being spent, and service users’ experiences.’ NHS England will also support up to three areas to redesign and improve their wheelchair services – although it doesn’t say which areas! Perhaps they have to make a bid for funding; if so, how? That’s bureaucratic-speak for ‘we’re paying lip service and hope the issue will go away’.
Given the number of people who rely on a wheelchair, some only temporarily, isn’t it time that the Health and Wellbeing Boards made this one of their top priorities? It should be on every agenda, forcing CCGs to address their own shortcomings and provide evidence to every meeting. How many Health and Wellbeing Boards actually have wheelchair users – or indeed anyone disabled – as members? If the answer is none, perhaps that should be corrected immediately; they need a strong voice at the table, people with personal experience, rather than those who think they know best.
The ten-point charter is essential reading for anyone concerned with outcomes; it makes common sense recommendations, including:
- Person-centred service with equality of access, regardless of age or postcode;
- Time from referral to delivery no longer than 18 weeks, with maintenance and emergency backup;
- Regular reviews, and prescriptions which take account of current/future needs;
- Flexible budgeting, working with key partners to strengthen service integration;
- Supporting clinicians, manufacturers and independent organisations to develop innovative, affordable solutions.
From a purely commercial viewpoint, an efficient service saves the state money, reducing pressure on other aspects of care and support but, most importantly, giving victims the respect they deserve!
Whilst we are on the subject of disability, I was struck by an article in the Sunday Times - “We lost limbs for this country; don’t make us beg for new ones” - highlighting the plight of a triple amputee from the Afghan campaign, who has been forced to ‘beg, borrow and steal’ to get the expert help he needs, leading to extreme stress and anxiety. He has relied on a wealthy philanthropist and charities to raise more than £130,000 for artificial limbs at an American clinic because the specialist technology or expertise enabling him to live without debilitating pain is not available in the UK.
This is just one of a number of cases outlined in a Blesma-commissioned report by Jon White, a former captain in the Royal Marines, also a triple amputee, who calls on the NHS and Ministry of Defence to overhaul care for amputees. He has also had to raise £160,000 for visits to the same American clinic because his ‘NHS legs were painful and dropped off’ and, shamefully, ‘the NHS refused to pay for new sockets and a high-tech prosthetic knee’. The Americans are, he says, ‘much better at making the socket fit the leg’. If the Americans can do it, so can we. And we must.
Through no fault of our own, any one of us could be disabled, through stroke, illness, inherited disease. People lose limbs every day, whether on a fun ride at a theme park or through diabetes – are these victims also to suffer their prosthetics ‘dropping off’? The Blesma report states that ‘suboptimal prosthetic care is tantamount to physical abuse’. How true.
Those who hold the purse strings must be held to account for their decision-making. They need to understand what it means to lose a limb or limbs, to be confined to a wheelchair which doesn’t match need, and to experience the trauma of having their independence seriously curtailed for eternity.
If they truly had a grasp of this, I suspect they’d soon re-focus budgets, instead of employing Directors of Change (which means employing more clipboard holders).
Chairmen of our Health and Wellbeing boards can make real change happen, by reading and responding to these two powerful but short documents, rather than allowing them to be buried; it will be challenging, but so worthwhile. First on the list should be an application for that NHS England funding pot to transform wheelchair services.
We have some of the best engineers in the world; if James Dyson can improve the hoover, he could surely produce the most technically advanced wheelchairs and prosthetics so, as part of my bid for this funding stream, I’d organise a competition for people to come up with ideas - it’s worth a try. What a coup for the authority which attracts the best solutions.