Dr Carole Buckley I’m Dr Carole Buckley and I’m a  retired GP from Bristol in England. Additionally,   I was also the autism representative for the  Royal College of General Practitioners and I have   received honorariums for talking at conferences  for both FLYNN PHARMA and for Pulse Live. What we’re going to look at today is some  practical advice for ways of accessing healthcare.   It’s a challenge for anybody to access healthcare,  but if you have additional needs, the problems may   appear almost completely impossible, and we’ll  look at practical ways to get beyond that,   to get the appointment and then to explain the  problem once you get to that appointment. I’m   doing this based on 30 years’ experience  as a Family Doctor, but most importantly,   I’m doing this because I am the mother of a young  man with quite significant additional needs.   The talk is aimed at young people, their  carers and families, but may also be of   interest to healthcare professionals  because it might give them some ideas   about the challenges that are facing you when  you get to tho – your – those appointments. So, the first thing about getting an appointment  is to think that you need to make sure that the   diagnosis is coded as a significant and active  problem on your health records. Why? Because   that means it will be the first thing that  somebody sees when they open your records. So,   the Receptionist booking your appointment, the  Nurse seeing you, the Clinician seeing you,   the first thing they will find is that you have  got this as an active problem on your records. There are also other things you can do  to make getting the appointment easier.   If you’re registering somewhere new, or  going somewhere new for the first time,   and you, your relative, the person you’re  caring for, is anxious about visits,   then arrange some time to visit where  you actually don’t have an appointment,   where you don’t have any interventions that  are needed. Where you can just go and wander   round the place, say hello to people, see  who’s sitting behind the desk in reception,   see where everything is and get some idea of  how noisy it is and how active it is. Also,   it’s quite important to make sure that you’re on  the carers register. We’ll allude a little bit   more to that later, but it does mean that you  will also have access to additional services. So, what else are we going to do to make sure  that you get into those appointments properly?   You should highlight any reasonable adjustments  that are needed to allow you equitable access to   the services. You should make sure that  these adjustments are clearly flagged   on your records. In the United Kingdom NHS,  we now have something called the NHS Spine,   and these reasonable adjustments should be on  that Spine, which means that they are available   to anybody accessing your healthcare records. If  you go to the Accident & Emergency Department,   if you go to the hospital, if  you go to the Community Hospital,   the Community Nurses all have access to the  NHS Spine, so they should all know about   these adjustments that you need so that you can  have proper and equitable access to healthcare. What might reasonable adjustments look  like? Reasonable adjustments might look   like having an early appointment or a late  appointment. Either of these will mean that   the waiting room is quieter. If  you have the early appointment,   it’s also unlikely that the Clinician that  you are seeing is going to be running late,   so you should be through in a more streamlined  way. You can ask for longer appointments. This   is really appropriate. Don’t be frightened to ask  for longer appointments when you go in. And also,   you can ask for somewhere quiet to wait, somewhere  quieter to wait whilst in the building, or   possibly even wait outside and wait to be called  in when it is your turn to go into the room. It’s really helpful to see the same Clinician  all the time. Now, this is not always possible.   If it’s an emergency, for example, you may  have to see somebody who doesn’t know you.   But if you are booking a routine or a follow-up  appointment, try and see the same Clinician. They   know you, really important. The other thing  to think about is having a consultation in a   place where you’re comfortable, such as the  garden or the car, or even on a home visit,   if that makes things much easier and it’s  a really important thing you have to do. An example of that is I had a young man  that I looked after for a good many years,   absolutely delightful young man, who found the  consulting room a really terrifying experience.   He would regularly have a meltdown if he  tried to come into my consulting room. There   were bright lights, there – it was a clinical  space, there was a computer sat on the desk,   there were all sorts of things happening around  the place that he really didn’t like. So,   we used to consult in our garden. We, in our  practice, we had a really nice walled garden.   There was a fountain with water flowing  from it nicely, which was lit up. I would   go out – I would know why he was coming. His  mother would let me know what the problem is,   and I would go out into the garden to meet him  there, with either my stethoscope or my auroscope   or anything else I thought I might need to  actually be able to see him. We did sometimes have   to use an umbrella if it was raining, but it was  still very successful and it was very appropriate. I’ve also done vaccinations in a car because the  person really didn’t want to get out the car.   This was a COVID vaccination, it was really  important that we try and get through it,   so I went out to the car and did it  there. And the unit that my son is in,   which is a residential unit, they actually,  the healthcare professionals mostly come to   the unit to see people, because actually, you  get so much more from visiting somebody at home,   or performing an intervention at home,  like a blood test or doing a vaccination,   than you would do in a frightening  consulting area that’s unfamiliar to them. Other reasonable adjustments you might  ask for. It’s really helpful to have a   key named person to navigate the system  for you. This might be a Receptionist,   it might be an Administrator, or a Nurse.  It’s not necessarily your Doctor. We used   to have somebody at the practice called Rita  and what we used to do was have a direct line   though to Rita for somebody to phone. They  could phone Rita and Rita would make sure   that they got in to see the right person at the  right time, making it as smooth as possible. You also need to make sure you get accessible  information in a format that you understand,   about services, like appointments,  prescriptions, where to get prescriptions,   what happens to prescriptions? Is it now an  electronic transfer of prescriptions? And also,   about any screening services that  might be available. Really importantly,   if you don’t understand something, say so. It  is not an embarrassment to say that you do not   understand it. It should be able to be explained  to you in a way that is clear and logical to you. So, how do we go about improving health outcomes?  We all know, unfortunately, that either a   learning disability or autism lead to poorer  health outcomes than the general population.   So, in the United Kingdom, you – all people  with a learning disability should be on a GP   Learning Disability Register, and are then  eligible for an annual health check from the   year of – from 14 years onwards. So, what  are the benefits of this registration? Is   there any point to it? Well, actually, it is  a great way of accessing screening services   with practice staff who are understanding  of your particular needs and will create a   rapport with healthcare staff that will serve  you well for the future. Being on the register   will also ensure you are called for annual  vaccinations against such things as flu or COVID,   or any other special services that are arising.  Because if you have a learning disability,   you are eligible for more services than the  general population at your age are eligible   for. So, make sure you’re on that register,  if you’re registered in the United Kingdom. So, how else do we go about improving your health?  Well, preparation is important. If you’re going to   an appointment, consider writing down what the  problem is. This will improve communication in   the consulting room, and if you have one, take a  health passport with you. Also, consider taking an   advocate to help you communicate if you feel this  will help yourself or your relative, because it   can feel very intimidating if it’s your health and  your problem and you’re in that consulting room.   And before you leave that consulting room, make  sure that you are absolutely clear what the next   steps are. Get a written advice in that accessible  format. Know what follow-up might be needed.   Don’t accept a vague, “Well, come back if you’re  not better,” because what does that mean? Does   that mean come back tomorrow if you’re not better,  or does that mean come back next week if you’re   not better, or does that mean come back next  month if you’re not better? Often, as healthcare   professionals, we really aren’t clear about  these sorts of things, so ask, you know, don’t be   embarrassed, ask. Ask for further help, ask what  is absolutely needed and don’t be afraid to do so. So, once you’ve got through that first  appointment, once you’ve got in to see   your Family Doctor and you’ve got through that  first appointment and you’re comfortable with the   services and you know what things are happening  and you know where your prescriptions are going,   what happens when you get referred to a hospital  or another service? ‘Cause that also is a very   big step to have to take. So, if you are being  referred, make sure that the referral letter   includes those reasonable adjustments that you  might need to access the service. Although this   should be on the NHS Spine in the UK, as we’ve  already alluded to, you need to make sure. You   need to make sure, and additionally, if it’s in  the letter, then even if somebody hasn’t bothered   looking at what’s flagged on the NHS Spine,  they will see it when they open the letter.   Use a patient passport at appointments,  particularly if you’re seeing a Doctor or   Nurse that you haven’t seen before. And there  are a number of organisations that provide   these resources and at the end of this talk,  there are some links to places where you can   get additional support around appointments,  and there are examples of health passports. If it’s an emergency referral to services,  a medical emergency is harder to control   and it’s really important that the Emergency  Services know as much as possible. Things to   consider when going to A&E is that they are  scary, noisy, busy places and in many areas,   there’ll be a long wait to be seen, but  it’s – if the service is expecting you,   it can all run very smoothly. An example of that  was when my son had a seizure and sustained a head   injury. The Paramedics were called, and he had  to go to the local A&E Department to see somebody   to make sure that he was okay. Not only did a  member of staff accompany him in the ambulance,   but the Paramedics contacted the Emergency  Department to let them know that he was coming. So, instead of going in his slightly confused  state, he had just had a seizure after all,   into the waiting room to register at the desk  with the other people waiting to be seen,   he was taken straight through to what’s known as  the ‘majors’, which is the area where people who   are seriously ill go, so they don’t have to go  through the waiting room. He went into majors,   the staff were expecting him, he went into  a single room on his own, so that he wasn’t   distressed in any way and a member of the medical  staff came to see him very quickly, knowing full   well that his needs were more complex than your  average patient. It all ran completely smoothly,   and he was back home eating his tea within  an hour, which is just marvellous service.  The other thing is if you’re going to  an emergency appointment like this,   they can make sure that appropriate sedation can  be arranged for such investigations as X-rays. And   back to my young man and his garden consultations.  When he came into the garden one day to see me,   because he’d had a fall at school, it  was very obvious that he had, in fact,   broken his arm. This is unfortunate, but  I went and made some phone calls to the   local hospitals. The first hospital I  called, the staff were very unhelpful.   The Nursing Sister that I spoke to said that  they were used to dealing with young people   and they would hold him down while he got his  X-ray, and I really shouldn’t worry about it. And I was not at all happy about that as an idea,  so instead, I used the Children’s Hospital and   I telephoned ahead and spoke to the Orthopaedic  Registrar on-call. I explained the situation to   the Orthopaedic Registrar on-call, who completely  understood what was going to be needed for this   young man. His mother took him straight into that  depar – A&E Department, where he was an expected   patient. He was whisked through. The Anaesthetists  were able to give him sufficient sedation that   they could do the x-ray and plaster his arm before  the sedation had wor – run out, and he came out   with a nice plaster, all things were honky dory,  it was fantastic. So, just really important that   if you let the services know what is needed,  that things will run much more smoothly. So, finally, we come to my last slide, where I did  mention that I would give you some links to health   passports. The first of these is the National  Autistic Society in the United Kingdom, who have   a very useful health passport, and the second of  these is Mencap, which is a learning disability   organisation also in the United Kingdom. It is  absolutely essential that health parpor – health   passports are kept up-to-date, otherwise they’re  not much use. You need to make sure that all the   right information is there for when you go to  these hospital appointments. I would also like to   say that the Mencap website has some fantastically  useful information, not just about healthcare,   about many other aspects about what services are  available to you and what else that you might do. I would like to say thank you for listening and  I hope you find these tips that we have shared   useful in accessing healthcare in the future and  that things will go much more smoothly for you,   and that you won’t find us Doctors half so scary  again. Thank you very much for listening, goodbye.