Visiting the doctor or hospital shouldn’t be that difficult – a few simple changes can make all the difference
November 24 2019
By David Bara MEd PGCE BA(HONS) and UN SDG 3 champion.
A visit to the doctor or hospital can be challenging if you are relatively healthy but if you are taking a child or adult with additional needs, have access issues yourself, need to juggle multiple appointments or to plan your transport, etc. it can all start to become very complicated and expensive quickly. It would take just a few small changes to the hospital system to make a big difference.
From my own experiences of being a parent of children with Special Needs and Disabilities (SEND), from talking to other parents/carers of SEND children, young people and clinicians both on the hospital wards and through my own investigations, I have pulled together the key issues that make clinical appointments difficult for SEND families and identified some of the ways they could be made a lot easier for the patients, families and medical professionals involved.
There are 3 key areas:
A. Appointments – The timing of an appointment, location and how often they occur can really impact on a family. Poorly timed appointments can mean a child misses a day of school and a parent misses a day of work. Sometimes SEND parents prefer morning appointments because their child gets too tired to cope in the afternoon, other families prefer afternoon appointments because it can take a long time to ready their child for a journey and hospital visit. Transport and journeys often have to be planned carefully because of distance or medical conditions and can cause stress even before the child has arrived at the clinic. Carers and meals may also have to be arranged for other children in the family. Lost workdays, transport and childcare costs all add up to significant financial burdens. Frequent appointments further exacerbate the issues and if there has to be liaison between carers who have joint custody, it can be even harder.
B. The built environment – clinical settings are often just that, clinical. Harsh, plain surfaces, uncomfortable chairs, beeping machines, odd smells, people in funny outfits that may have become associated with prodding and poking. Stickers of funny animals on the walls aren’t quite the distraction they are meant to be. Hospitals are large places, your journey may be convoluted or you may get lost; on your way round, you might see people on gurneys with tubes sticking out of them, children crying, worried parents and that is before you get to your own appointment.
C. Communication, trauma and support – It is so important that everyone – the patient, the carer and the clinician – understands what is going on. Stressed parents may have difficulty understanding or accepting what a doctor is saying, especially if medical terms are used or if language is an issue. Some cultures actively discourage questioning of authority figures such as doctors and sometimes people do not know what questions to ask or are embarrassed to admit they don’t understand. It can be difficult to understand a patient, they may be too young or have communication difficulties. They may show their fear with bad behaviour, becoming uncooperative or even violent. Using restraint can be traumatic, ensuring that future visits are highly stressful for all.
There are a number of no-cost or low-cost options, which many hospitals and clinics are already adopting but which really need to be implemented in all health settings:
1. Give a choice of appointment times or create a database where people could chose their preferred appointment times and days. This would reduce clashes with regular appointments or workdays, it could help with travel plans and would also ensure that patient and carer was in the best frame of mind to see clinicians.
2. Create clinics where more than one clinician can be seen at the same appointment. For example, Great Ormond Street Hospital have recently introduced an oncology clinic for children who have finished treatment and are in remission. Happily, our daughter is one of those and in May we saw the oncologist, endocrinologist and neuropsychologist in one appointment. Such clinics help reduce the number of journeys into hospital and the number of school and workdays missed.
3. Create standardised ‘patient passports’ or behaviour plans that detail a how a patient likes to be approached, any challenging behaviours, triggers or calming techniques, which are accessible to all medical staff, including the emergency responders. The passports can also include key communication information, which ensure clinical staff understand the communication needs of patients and carers.
4. Encourage clinical staff to speak clearly to patients and their families/carers and confirm that they have clearly understood any medical conditions or upcoming clinical procedures, and the reasons for them. Clinical staff need to avoid medical jargon, in particular. Sometimes, it just helps if a doctor says, ‘I know that is a lot to take in, do you want me to repeat or explain anything?’.
5. Make it a statutory requirement for people with a range of disabilities to be involved in the design of new and refurbished clinical spaces.
6. Ensure that all hospitals and clinics have 3D virtual reality tours available of journeys within hospitals, so that carers and parents can plan journeys and prepare their children for it.
7. For children, provide Health Play/Child Life Specialists across all hospital settings. Health Play/Child Life Specialists can help children stay distracted and calm for their procedures and for those accompanying. They can act as liaison between families and medical staff and ensure that all parties understand what needs to happen. They have the potential to make significant cost savings (for example reducing the need for anaesthetics and sedatives) and improve the well-being of patients and the ability of medics to treat their patients with greater accuracy and efficiency. Children often get scared when a close relative has a health procedure and Health Play/Child Life Specialists can support the child’s understanding.
Adopting these solutions, can reduce the financial, emotional and physical pressures on families and in turn have real benefits for clinical staff. With better appointment times and improved communication, patients are better prepared for the clinical experience, resulting in more positive consultation for all. Making some basic changes can not only reduce the stress of families who, let’s face it, really wish they weren’t there in the first place, but can also reduce the economic burden on the system. As I mentioned before, many hospitals are already doing a lot of these things, they make a lot of sense, so maybe it is time to encourage your local representatives to advocate for them?
David Bara (MEd PGCE MBa HONS) has 15 years in the field of special educational needs as a teacher, university lecturer, researcher and a SEND parent. He and his wife, Emma, set up www.wecanaccess.com as a way of tackling some of issues that surround access to places, spaces and services for them as family and for the families around them.
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