Getting the right specialised equipment for children with complex healthcare needs is not easy. It requires effective communication and co-operation from a range of people, including, but not limited to, the individual, their family and carers, healthcare professionals and trained, knowledgeable manufacturers. Even just co-ordinating diaries for an assessment for a piece of equipment can sometimes seem like a monumental task.
For instance, healthcare needs like postural care require specialised equipment, such as sleep systems and positioning systems that reduce the risk of body shape distortion, which can lead to secondary health complications. But the range of equipment available and working out what specific piece is going to be the right one for a person can seem daunting.
However, the importance of getting it right must never be underestimated. The right equipment can open doors – literally and figuratively – provide much needed independence, help an individual to communicate, bring health benefits and increase an individual’s sense of wellbeing and happiness.
Kate Waugh, disability support manager at Birmingham City University, summed it up succinctly: “Independence is precious to everyone, but even more so when you are disabled – it’s hard-won, and the right equipment can make a huge difference. If you get a piece of equipment that isn’t right for you, or isn’t reliable, it can have a huge impact on your life.
“You may end up being dependant on other people, which can be miserable, and not being able to do things which non-disabled people take for granted, like getting to work, socialising or even just getting around your house.”
Yet some people still struggle to get the right equipment when they need it. A study in equipment provision by the charity BDF Newlife in 2007 looked specifically at what was being spent on essential equipment for children across the UK and found that, on average, “statutory services spend little more than £30 per child on special disability equipment.”
Charities and families were seen to be picking up the bill or children were simply going without the essential equipment. It is assumed that the picture of equipment provision for adults is even bleaker as many charities exclude adults from their criteria.
The direct impact upon the health and wellbeing of children is scandalous, with many experiencing secondary health complications due to ill-fitting or non-existent equipment. Carers are also being placed under extra stress and can “suffer illness and injury as a result of caring for growing children and we know of families who get into major debt trying to help their child when statutory services fail.” (BDF Newlife, 2007)
While the personal impact of poor provision can be high it also has an economic impact. It has been estimated that even a 1% failure rate in the provision of specialised equipment and adaptations that results in a secondary episode of care, e.g. care home or hospital admission, costs the English health and social care economy £5 billion per annum (Donnelly, 2011). With cost-cutting at an all-time high within NHS and social services this financial statistic is truly appalling.
A forthcoming publication from the British Healthcare Trades Association (BHTA) and The Centre of Economics and Business Research is expected to demonstrate that greater investment in specialised equipment and a more personalised approach in delivering it will have a huge impact on not only the health and wellbeing of the individual, but also in cost savings by limiting secondary complications and the financial costs associated with them.
As well as health benefits this paper is also expected to demonstrate that farther reaching consequences can be expected if equipment provision is got right for people. This includes improving the quality of life for the individual using it and their families, resulting in less stress and anxiety, greater participation in everyday life, improvements in self-esteem and helping to develop and expand an individual’s potential. The paper will recognise that better equipment provision will require a larger outlay in the initial purchase but investing more money at the start should see huge cost savings later.
So how do we improve equipment provision? How do we know what equipment is right and how do we access it? What happens when something goes wrong and how can it be put right? These are all issues with no simple answer, but there are steps that can be taken to ensure that any equipment sourced is fit for purpose.
Firstly, the best provision stems from a mutually respectful relationship between the individual who needs the equipment, their family, carers, any healthcare professionals involved and the equipment provider. The needs of the individual come first and everyone involved has to know why the equipment is required.
This needs open and honest discussions from healthcare professionals and the specialised equipment manufacturer as to a piece of equipment’s use, limitations and benefits. Only then can someone make an informed decision as to whether that equipment is right for them.
It is important to recognise that it won’t necessarily be “that the ‘best’ product in the market is the most suitable piece of equipment” for that particular person (Donnelly, 2011). People should shop around, test things out, go to exhibitions and find out what is available before buying.
Organisations such as the BHTA also have a role to play. Equipment manufacturers and providers can sign up to the BHTA and in doing so they agree to abide by the BHTA Code of Practice, which is enforced by The Trading Standards Institute.
Due to the vulnerable nature of their customers, BHTA members agree to abide by certain rules on ethical selling, such as having to protect pre-payments or deposits and not using high-pressure sales tactics. If a member company flouts any of these rules there is the opportunity for the consumer to seek redress through an independent scheme. Checking whether an equipment provider is a member may be useful in case something goes wrong later down the line.
Taking a personal approach to equipment provision, by working in partnership with individuals and their families, and ensuring that any equipment purchased is bought through a reputable company should help reduce the risk of equipment being abandoned, unfit for purpose or damaging.
Work conducted in Wakefield shows how a personalised approach to specialised equipment provision, along with family training and support, has had a direct impact on the health and wellbeing of children in the town (Carter, 2013). Over a nine year development, which has seen coordination from families, therapists, surgeons, wheelchair clinics, special schools, respite services and the community equipment store, Wakefield has developed a personalised postural care service.
Postural care works in Wakefield because the whole team has knowledge and understanding of the principles/ philosophy of 24-hour postural care; this is evidenced by the improved physical results achieved for the children involved. All members of the team recognise children are at risk of developing body shape distortion and a well-established pathway is then put into place. There are also various parent support groups that provide their own solutions and help for each other when looking at postural care, especially with regards to sleep systems.
More families actively seek out information about sleep systems as so many of the children use them successfully. As a result, in Wakefield there are no children or young people with complex needs that have a dislocated hip, other than one girl who has moved to the area with existing bilateral hip dislocations.
The partnership working in Wakefield shows that getting the equipment provision process right can be done and has direct positive health consequences for the most important people involved: the individuals themselves.
