As chairman of CECOPS (Community Equipment Code of Practice Scheme), as well as someone who has been disabled for almost all of my life and a user of a wide range of disability equipment, I am delighted to welcome the development of our new code of practice for disability equipment, wheelchair and seating services in the UK. This was the logical next step, building on our successful code for community equipment services, and is a significant step towards improving people’s experience of private and statutory provision of wheelchairs and disability equipment. As well as setting a national benchmark against which services can be measured, the code also sets a level of service people should expect to receive – something that has been missing for a long time. The new code breaks new ground as it not only promotes integration of services, holistic assessments, and delivery of true person-centred care, but also shows how to do it.
BACKGROUND AND PERSONAL EXPERIENCE
We hear a lot about ‘person centred care’ but nowhere is this more lacking at present than in the structure of disability equipment services. I am one complete person and I need to be treated as such. However, in my experience, the people designing services often fail to appreciate that a disabled person uses a full range of disability equipment, e.g. wheelchair, speech board, telecare, handrails and ramps, and many other items. Each type of equipment tends to be compartmentalised, resulting in a multitude of different equipment related services, each with its own multiple assessments, commissioning structures, and arrangements in place. Therefore we, as users, have to visit different people for each piece of equipment if we are to get what we need. After a referral, we need to wait patiently for an assessment but when the day finally arrives we are informed that equipment can only be provided to meet a specific need, such as health, but not other needs. As our impairments do not conform to such administrative boundaries, this often results in a piece of equipment that meets only part of our needs, therefore limiting our wider independence.
After our assessment we often have to wait a long time for the equipment to arrive. At last it turns up, but unfortunately it might be a poor quality product and a bit uncomfortable. We contact the equipment service to complain, but they tell us that they are limited in what they can provide because of strict eligibility criteria set by the commissioners. They are also under pressure to purchase lower priced products because funding does not match the demands they need to meet. It’s too easy to blame the equipment service for all of this as it is our immediate contact; the problems are usually much deeper than that. The problem lies in the way the whole system works; the whole delivery of services is hugely disjointed and a very poor experience for service users and their carers. If we were to design services from scratch, I doubt very much we would end up with what we have in place today.
To make any lasting improvements, we need to understand and measure the demand for services, provide funding that matches that demand, and ensure that equipment related services are appropriately commissioned in an integrated way that allows for a holistic and person-centred approach. This needs to be supported by having clear and realistic specifications in place, and competent staff to deliver the service. Crucially, users and their carers need to be involved all along the way.
This vision is nothing new: we know what a good service should look like, and every report relating to equipment and wheelchair services for the past 40 or so years has told us so. I have seen successive governments commission studies and reviews of disability equipment and wheelchair services going right back to the Sharp Report of 1974, which examined the mobility of disabled people. I recall the McColl report in 1986 and the recommendations that followed from this. My experience tells me that recommendations, whilst they are a good start, need to be backed up with robust and meaningful change. We must also be able to measure the success of change, and ensure it is sustainable and able to withstand changes in government policy or demographics. We need to make the vision a reality and CECOPS’s new code of practice will go a long way in helping to achieve this aim.
THE NEW CODE OF PRACTICE
The code of practice starts with the service user and looks into services from the outside. It strongly recommends the involvement of service users and their carers - disabled people are not fools and should not be passive recipients of services provided by professionals. The force of user involvement is something that has not yet been fully harnessed and utilised in the development of these services. This is where real changes can be made. I therefore welcome the parts of the code that refer to user involvement.
For many of us disability is not an event but a long term feature of our lives. We know that a short term solution can often have long term consequences that cost more to manage than could ever be saved by the cost conscious, short term solution. The work of CECOPS and the code looks long term - and that must be right.
CECOPS and the code of practice are tools designed to support central and local governments, commissioners and providers alike, in order to ensure the service user gets the outcomes we all want to see. As this new code spans across a range of disability equipment services, including wheelchair and seating, it will play an important role in breaking down the artificial and long standing silos between services and organisations.
We hope our range of services will be utilised by everyone with an interest in these services, whether by simply acquiring a copy of the code, registering with CECOPS, becoming accredited via an external assessment, accessing our approved training scheme, or using our superb new self-evaluation tool for commissioners, providers and clinical staff, iCOPS®.
We look forward to working with you all now and in the future!
Sir Bert Massie is the Chairman of CECOPS. Sir Bert has held senior roles previously, including being chairman of the Disability Rights Commission, and chief executive of the Royal Association for Disability and Rehabilitation (RADAR). He was appointed a CBE in 2000 and knighted in 2007.