Using Assistive Technology to Deliver Long-Term Care – what would help our patients? Dr Allison Graham, Consultant in Spinal Cord Injuries National Spinal Injuries Centre (NSIC) Stoke Mandeville Hospital

History of Spinal Injuries Centre Established in 1944 Largest and longest established spinal injury centre in Europe, now 125 beds Covers mainly south and East of England Paediatric/child referrals from all 4 home countries 5000 active caseload

Remit Provide life long care – therefore have developed an extensive database of patients as patients living longer Patients travel to us for care and treatment – can be long distances We do have Outreach services for acute and ongoing care, but these are currently physical face to face.

What is spinal cord injury? Tetraplegia or quadriplegia. This means your arms, hands, trunk, legs and pelvic organs are all affected by your spinal cord injury. Paraplegia. This paralysis affects all or part of the trunk, legs and pelvic organs.

Where our patients live SCI Patient Population density mapping for the National Spinal Injuries Centre

Who are our Patients? The acute patients Now in an Intensive Therapy Unit, or Major Trauma Centre What do we need? – Early information about the patient – The ability to talk to treating clinicians in other hospitals – the doctors, nurses, physiotherapists etc

What does the patient need? –Input of a specialist spinal cord injury clinician to prevent complications occurring and review current complications –Information about what the treatment at the NSIC is likely to entail –Psychological support for self and family –Encouragement that there is life after paralysis

The Rehabilitation Process Patients admitted to Stoke Mandeville as in patient for 6-9 months Need to be able to keep in touch with family and friends Need to learn a lot of information- need to be able to access this at later date- try use of patient specific education on website accessible by our patients Families need to access this information Use this as a back up to what information staff give face to face over lifetime

Spinal in-house Services! Adaptive equipment training (voice-activated computer, environmental control, emergency call systems, etc.) Personal carer training Patient education Community re-entry classes Driver's training, adaptation, car and van clinics General health promotion Hand surgeries and bracing Home modification consultation Neurophysiology laboratory Neurosurgical consultations on-site

continued Orthopaedic clinic Orthotics clinic Pain clinic Rehab engineering workshop Seating and posture clinic Sexual health programs Skin clinic Spasticity clinic Stress management Swimming pool therapy Education for school-age patients Wellness promotion programme Wireless high speed internet service and access Women's health services and information

Follow up for life Patients attend for review- physically come here- could this be altered? Patient contacted by skype etc to have consultation on well being and prevention matters and investigations and examinations arranged after this initial discussion Some conditions such as pressure ulcers can be seen on screen with patients and community team in patients home and recommendations for treatment made. Reduces travel for patient which could compromise skin further. Outreach clinic- therapists and nurses can contact doctor in Centre at distance- improve throughput of service

Currently very traditional approach

Extending follow up for life Complications of spinal cord injury –General health and well being assessment –Pressure ulcers –Bladder problems – bowel disorders –Chest complications –Patients with mechanical ventilators –Intrathecal drug delivery systems- programmer by computer- can this be done “on line” –More patients can be seen with centralised staff and easier access to these staff –Ageing with spinal cord injury

Challenges for future working The chasm of where we are and where we want to be Having faith in making the changes Ensure it is functional and fit for purpose

Telemedicine for us How do we extend the continuum of care into home and community for a complex, expensive specialised service? How does the newly injured person integrate back into their real world? What services can we as the NSIC offer in the persons home? What do we want to use, information, education, communication, rehabilitation, wellbeing?

Some problems- Getting to hospital How difficult is it to get these people to hospital?

Why travel? Studies at NSIC have shown that mobile phone technology taken at patients home can be diagnostic when sent into clinicians at the centre Stay at home but be treated by your own medical team

Prevention Identify those at risk after discharge and do virtual home visits via skype. Current system is for a senior nurse to visit- due to widespread patient catchment area and south- east traffic- rare to see more than 2 patients per day! Telephone calls too impersonal- need to see what is happening!

Going Forward How can we best utilise telemedicine and telehealth for the benefit of all of our patients? Why is the NHS “on the ward” not keeping up with commercially available systems?

Telerehabilitation Most people with SCI can benefit from telerehabilitation as a tool to support assistive technology interventions. The choice of technology has to fit the needs of the person served rather than the availability of new tech. Needs to aim to promote personal responsibility for wellness and improvement- again the right person to be chosen

Long distance rehab Hand function rehabilitation scarce in community Therapist sits in clinic with several patients on line adjusting treatment

Keeping well and improving What do patients have that can be used already- apps for treatment as well as information

Barriers- users In the healthcare sector, there are very specific barriers to adoption of innovations with regards to those in telehealth and telecare. Older adults strongly prefer continuing care with an individual physician (Thorpe et al. 2011). So the challenge would be to strike the right balance between traditional human contact and technologically advanced but seemingly impersonal practices.. Thorpe et al Patterns of perceived barriers to medical care in older adults: a latent class analysis. BMC Health Services Research. Available online at

Face-to-face appointments Central to healthcare, but are not necessary in every case, can often be inconvenient for patients, carers and families. the ability to use for non-confidential communications or to have a remote consultation with a doctor using the telephone or online technology, would often be a more convenient way to access NHS services. 90% of all interactions in healthcare are face- to-face and that every 1% reduction in face-to- face contact could save up to £200m? 2012

Why technology Appointments for people who really need them. Fitting in with people’s lives and delivering faster and more convenient services. Improving patient choice and satisfaction levels and enhancing quality of care. Helping to deliver efficiency gains by reducing face-to- face interaction. Empowering patients to take control of their own healthcare needs and promoting self-care. Improving collaboration across healthcare, social care and industry. Cut carbon emissions by reducing unnecessary travel to appointments.

Too good to be true? Whole System Demonstrator (WSD) The early headline findings from this study show that if used correctly telehealth can deliver the following Reduction in mortality rates 45% Reduction in emergency admissions 20% Reduction in A&E visits 15% Reduction in elective admissions 14% Reduction in bed days 14% Reduction in tariff costs 8%

Big problems Can hospital IT departments cope with challenge- broadband speed, confidentiality, exchange of information? Who is involved- is this a tele- technician/teletherapist role rather than IT for patient admin systems? Cost- who pays- hospital or home? What do patients have that can be used already- apps for treatment as well as information

What to do? Joined up thinking Technology exists but people need to be brave to step outside existing walls of care Review human factors Review appropriate technology Embed change in whole care pathway

Remember how far we have come?