E28 LD
NOTE:  THIS TRANSCRIPT WAS PARTLY AI GENERATED AND WILL CONTAIN ERRORS!

Context

[00:00:00] Munir Adam: ​Hi guys, welcome back to Primary Care UK, the podcast for the multi professional workforce working in primary care. It's Munir Adam here, and today's topic is Learning Disability. What we're doing is continuing a series, or mini series I should say, of topics where we look at patients where we believe the inverse care law applies.

[00:00:28] That is to say that because of who are or what they have, they're not able to access health and care the way other patients may be able to. And so I believe that it is incumbent upon us to try to put a bit of extra effort to make sure that they don't lose out. So, yeah, we're in season two of Primary Care UK, and this is brought in collaboration with Integrated Care Support Services, who have sponsored the podcast. And if you would like to sponsor a future episode or more than one episode, please do get in touch with us by using the links in the show notes. 

[00:01:02] But back to the topic, and the thing is, I really just don't feel comfortable that those who are simply able to speak up and express their views and be assertive and be demanding should get better care, and those who can't do that should lose out.

[00:01:16] I'm just not happy with that, and I don't know how you feel about that. I feel that we have a moral obligation to provide care and services based on their need. You know, that should be our driving factor. But unfortunately, reality just isn't like that. And that's why in this second half of Season 2, we're making an effort by identifying groups of patients who may lose out, unless we put a bit of extra effort to try to address their needs.

[00:01:42] Last month's episode was on the homeless, who are another obvious group that would lose out. And now we're going to look at those with a learning disability. Now, the first thing to say is there is no standard way of dealing with those with a learning disability. You know, it would be wrong to try and give a formula that will always apply.

[00:01:58] So we're not going to be talking about how to do an LD review. You know, that could end up just being a tick box exercise unless we actually have, uh, spent a little bit of time thinking about the factors that really matter. But rather, it's about things that we should all bear in mind. Perhaps it's a reminder for us.

[00:02:18] Otherwise, we could end up in the situation where somebody comes to us with mild learning disability and we get frustrated why they just won't get on with it. You know, I had one like this recently. A patient came along to me and he, lucky for me, he said, Look doctor, I have mild learning disability, so I am a little bit slow.

[00:02:39] Please bear with me. And I thought, oh gosh, I'm so glad he said that. Because otherwise I'd be thinking, I've only got 10 minutes, why doesn't he just get on with it? And of course it wouldn't have been his fault at all. But not everybody is going to say that when they come in. And what about all the other needs that perhaps they're not even aware of?

[00:02:56] So, how should we think differently about this? What can we do more to help these patients? Let's find out. So the conversation is between our Primary Care UK team member, who is also a Clinical Pharmacist, Irina Varlan, who you may remember from a previous episode. She's a pharmacist working in Nottinghamshire, and she's interviewing Alison Barr, who is a senior experienced pharmacist who also leads in that area.

[00:03:23] So listen and absorb, internalize and let the improved you come out the next time you deal with a patient with learning disability. If you're in a management role, perhaps you can think about how you can improve the services that your practice or organization provides. Stay tuned. 

[00:03:39] 

Defining LD & Prevalence

[00:03:52] Irina: Hello. Hi, Alison. And thank you for joining us today. Can you please introduce yourself so that the listeners know a bit more about yourself and the background and your role?

[00:04:03] Alison: Hello there, Irina. My name is Alison Barr. I'm Principal Pharmacist for LD and Autism for Nottinghamshire Healthcare NHS Foundation Trust. Although I'm employed by the Trust, the majority of my work really is based in primary care and it's aimed at improving the quality of life for patients who have LD and autism. I'm also a mum to two boys with autism, so a lot of the passion for my work that I do has been driven by 30 years of life experience and where I've supported them through the health system. There's been lots of positives, I have to say, and real key events to learning, for me, that I've used in my career, but there's also been some significant moments that perhaps could have been managed better, and that makes me strive to get that perfection and get that knowledge within the system.

[00:04:48] Irina: Thank you, Alison. Thanks for sharing that with us. So we're speaking in today's episode about patients with learning disabilities. Can we try and define what having a learning disability means? Is it the same as having a learning difficulty?

[00:05:02] Alison: It's not the same as having a learning difficulty, which I'll explain a little bit later on, but I'll start by giving you some brief statistics. So, to define the term learning disability in its official context. There are approximately 1. 3 million people with a learning disability in England. This includes 950, 000 adults aged over 18 within the country. Within a typical GP surgery of say 8, 000 patients, you might expect around 50 to 100 to have a learning disability. The definition of a learning disability can be defined as a significantly reduced ability to understand new or complex information and to learn new skills. This is accompanied with a reduced ability to cope independently. And what we, what we determine it there is as impaired social functioning. All of these key indicators must have been present before adulthood. 

[00:06:03] And that last point's significant. Because what you will find that there's adults who might have developed similar traits following perhaps an accident or brain injury. But these people cannot be defined as having a learning disability. As the onset is in adulthood. 

[00:06:19] A learning disability is different for everyone. And the degree of learning disability can vary greatly. So we can classify it as mild, moderate, severe, or profound. In all cases of a learning disability, it's a lifelong condition. It's nothing that can be treated. And it's important to point out here, as you raised earlier, that a learning disability is very different to a learning difficulty. A learning difficulty is a reduced intellectual ability limited to one, perhaps one, specific form of learning. And this includes conditions such as dyslexia.

[00:06:56] Irina: I see. Thank you, Alison. So it's quite complex. 

Detecting LD

[00:06:58] Irina: How, how do you diagnose a learning disability? And especially considering we are speaking about children, potentially teenagers.

[00:07:07] Alison: So we might start recognising those signs early on. So in a very young child that can be difficult to spot, but examples might include perhaps babies who have trouble feeding, for example, sucking and digesting. There may also be delayed learning to sit or stand. Pre school children, they may be slow to talk, or have difficulty pronouncing words and short sentences, or learning new words. And school aged children might find reading and writing difficult, or have problems understanding information and instructions. However, some children only discover they have a learning disability when they become teenagers. Well, life becomes more complex with perhaps new emotions and responsibilities and they have a real difficulty in coping with that.

[00:07:53] Irina: I see, um, so it could be very well that this doesn't get diagnosed until they are potentially teenagers.

[00:07:59] Alison: Oh, absolutely. Absolutely. And what we do say is that perhaps any sort of delayed development under the age of four can't really be termed as a learning disability. When a child reaches four, that's the start, that's where we can start measuring milestones and perhaps considering whether patient does have a learning disability.

[00:08:19] Irina: Okay, I see.

[00:08:21] Alison: There's different degrees of learning disability too. So as a general rule of thumb, you would take into account the IQ of the person with the learning disability, but we'd never use that in isolation. All patients are very different. We also need to think about a patient's ability to communicate and how much support they need to complete their daily activities to define the severity of need properly.

[00:08:45] So, for instance, for a patient with mild LD, meeting that patient with mild LD, they might not initially exhibit any outward signs, but then, on closer interaction, it may be very evident that they perhaps don't understand the importance of perhaps brushing their teeth regularly, or they can't easily plan and carry out simple shopping tasks. Because they don't have any awareness of what money is and its value. So you might go out shopping and really not know whether a can of pot might cost ten pence or ten pounds. 

[00:09:18] Sometimes a person might not easily be able to wait their turn in a conversation and may become fixed on one topic of interest or perhaps an event like a bonfire that they want to attend. And they'll be really stimulated by this and keep returning the conversation to it. Perhaps like a young child. 

[00:09:36] Daily support needs will be, will fluctuate, and this will depend on life events at the time and what they're doing on a given day. They may not actually need support in day to day living, so they may have somebody that pops in to make sure they're okay, but the rest of the time they might be left to their own devices.

[00:09:54] Irina: I see.

[00:09:56] Alison: Profound LD, so we're going to the extreme there, so this is somebody who has a marked degree of learning disability. They may have additional physical, sensory, mental or mobility problems that mean that they may need around perhaps seven hours of support each day. Required support for such patients can be more easily predicted and often stays constant.

[00:10:19] So in a way, caring for such patients might be a little easier to predict. And for those patients with mild learning disability.

[00:10:27] Irina: That, that makes sense. Yeah.

[00:10:29] Alison: But don't ever, don't ever underestimate what might be needed by a patient with mild learning disability. Particularly in the context of healthcare, where they literally might have to hold their own in terms of attendance, making appointments, and engaging with healthcare professionals. 

[00:10:46] I had a patient recently that suffered a life threatening emergency with a perforated bowel, and it required surgery to save his life. When I asked why I had not mentioned being in pain throughout the week leading up to this, and it must have been significant pain, he replied, Well, I didn't think it was important, because you can't die of tummy ache. This was really heartening and enlightening for me. It was a real moment. And these are often the neglected patients, simply because they can get through life generally with minimal support.

[00:11:17] It's when something like this happens that they don't have the skills to recognise those red flags, balance information, and make good decisions. So as healthcare professions, we need to step in and help them with that. It's essential.

[00:11:32] Irina: Wow. Your, your example just shows how vulnerable they are and you are completely right in saying that, yes, maybe indeed people who suffer with a more severe form of learning disability, they would get the help put in place sooner rather than later compared to the um, ones with a mild learning disability who can get along fine the majority of time, but they do need just that extra bit to make sure that they are indeed safe and, and they cope.

The healthcare needs of LD patients

[00:12:01] Irina: What about the effect of having a learning disability in the context of healthcare? How are they different to other patient groups?

[00:12:10] Alison: So in some ways, there's no difference. So in terms of engagement, we would use our usual consultation skills and perhaps adapt them, which we'll look at later. But people with a learning disability are already more likely to experience a range of co existing health conditions. Around one in five will also have epilepsy, which brings about its own health challenges and risks.

[00:12:34] Thanks. Other co existing health conditions that can exist alongside LD might include perhaps Down Syndrome and again with that this can also include cardiovascular problems and difficulties with sight and hearing. All patients with Down Syndrome will typically have some level of LD but that can be variable. Other health conditions might include cerebral palsy. Again this might include complications such as epilepsy, speech and language difficulties and again around 50 percent of those patients will have LD.

[00:13:08] In general, people with a learning disability have worse physical and mental health problems than patients without a learning disability. And this comes from statistics issued by Mencap this year. In terms of life expectancy, there's changes there too, there's stark contrasts. The life expectancy of men with a learning disability is 14 years shorter. than for men in the general population.

[00:13:35] In terms of women, life expectancy of a woman with a learning disability is 18 years shorter than for those women in the general population.

[00:13:45] Irina: Wow, I see. I wasn't aware there is such a significant difference in life expectancy for these patients. What factors put patients with learning disabilities at a higher risk?

Barriers to healthcare and suggestions

[00:13:56] Alison: Well, there's a number of barriers that are stopping people with a learning disability from getting good quality health care. I'm only going to touch on a few today, but there are, there are a significant amount. such as, simple things such as, a lack of accessible transport links. It's simple but true.

[00:14:15] And this is particularly for those with mild LD. They might not have support or indeed access to transport, such as a car to get to appointments. They might not understand bus timetables. I know a lot of my patients with a mild learning disability are actually using their own money to pay for taxis, just so they can get to an appointment and most of these people don't work and have a limited income. So that's something simple and perhaps something that we don't think about 

[00:14:43] Time allocation for appointments as well. So particularly when you attend a GP surgery time is very very limited And they might only have a short appointment time in which not only can the patient not convey what their problems are, what they're there to discuss that day, but the clinician doesn't have adequate time to engage properly and carry out that consultation.

[00:15:05] So it's important we think about perhaps increasing those appointment times so that we can get that information from the patient and make that bond, that friendship, that relationship, that means that patient will want to access healthcare again. It removes barriers. 

[00:15:23] Sometimes patients are identified as having a learning disability. That might only become evident as you go down the line and you build a relationship with a patient. It might not be there from the outset. So we don't know to perhaps make a reasonable adjustment for that patient to access healthcare. We'll talk about reasonable adjustments later on. 

[00:15:43] Sometimes staff have little understanding about learning disability and there's a real risk of failure to recognise that a person with a learning disability is unwell. we spoke about earlier with the patient example, that patient had a tummy ache. That patient didn't tell anybody. That patient had no outward signs to anyone that he was unwell. So we need to think about that and accommodate that. We might not be able to make a correct diagnosis. Again, that might be due to lack of time.

[00:16:13] It might be that the patient isn't able to express all the symptoms they're experiencing. Or perhaps they don't express them at all. And it might be a lack of patient, of patient confidence, or perhaps patient anxiety in speaking up about what's wrong. Many patients with a learning disability don't like the hands on touch. They find that very difficult. And in a context where you don't understand the need for healthcare or the consequences of symptoms, why would you want somebody to touch you? Why would you put yourself forward for somebody to examine you, perhaps take your clothes off? things that you don't want to happen when you don't actually think there's a point there. 

[00:16:56] And also we talk about healthcare within a GP surgery. We have other healthcare providers and we need to make sure that there's joint work in there. We need to make sure that where we do refer perhaps in primary care, there's a comprehensive background for that patient is passed on to the next care provider.

[00:17:14] So they don't have to start from scratch, and so they don't lose that engagement from the patient. 

[00:17:20] Often we underutilise, um, the carer. So the carer, the person who knows that patient with a learning disability perhaps the best, isn't as involved in their care as they might be. need to make sure that we listen to those carers and that we take into account their views. We might find as well that we haven't had adequate aftercare or follow up care. The patient might get lost to follow up. So we may need to keep track of what's happening with each patient and make sure that if we've said we would want to see that patient again, that that appointment is made. I think there's also a lack of providing patient friendly information.

[00:18:00] There's lots of information out there. Choice and medication being one thing. And they are really, really important. We need to provide things in writing or in pictorial form that patients can engage with and understand.

[00:18:16] Irina: It's quite a mix of things, from access to services available, to lack of diagnosis, so they can actually have access to the available support, to lack of information, to lack of time, um, to not fully understanding. How do you think? And yes, it's quite complex. 

Social isolation

[00:18:36] Irina: Are they though then more likely to suffer due to social and psychological factors or isolation? Poor social life.

[00:18:44] Alison: It does seem so, and being physically present in a community does not really mean people with a learning disability feel integrated within that community, or even accepted by their peers. Social inclusion involves making meaningful connections and participating in fulfilling activities. And research suggests that as many as one in three young people with a learning disability spend less than one hour outside their home, perhaps on a typical Saturday when they have free time and when other people are available to engage.

[00:19:15] In a survey by SENSE, so SENSE looks at all disabled people, not necessarily, it's necessarily those just with learning disability. Half of disabled people reported feeling lonely, and that rose to over three quarters of patients for those aged 18 to 34. Loneliness itself is associated with physical and mental health problems too, and poorer quality of life, which again feeds into that reduced access to services.

[00:19:44] So in terms of accessing

[00:19:47] Irina: I see. It's, it's, again, it's coming back to engagement, isn't it? To, to engaging with the person, with the patient, with having that connection with them. And it's not just valid in society. We , we all want to feel accepted by, by society. We will all want to know that we have friends and people we can rely to, and it's equally available for patients with learning difficulties. So the overall quality of life just doesn't look great for a person with an LD. 

Expectations on Primary Care

[00:20:13] Irina: What, what does primary care currently offer to people with, with LD?

[00:20:19] Alison: So in terms of accessing services, it's a legal requirement to apply reasonable adjustments and we should offer them to all LD and autistic patients. Reasonable adjustments mean that we adjust our services to the needs of the patient rather than try and fit the patient into our needs. A reasonable adjustment might mean simply giving that patient longer time to talk in a consultation.

[00:20:45] It might mean where patients regularly don't turn up for appointments, which we do experience in primary care, that we look at why. Why is that patient not turning up when they've made an appointment? What can we do to help that patient be able to access services, turn up at an appointment time and have the care given that they need? As well as that, if we can encourage that engagement, encourage people to come to appointments that we've made for them or that they've made, then we'll be more relaxed and keen to give them that time, to give them more time within an appointment because we actually know they're going to attend. So that's really important. Soon, we'll be implementing a reasonable adjustments digital flag. That will be on all patients records within primary care. And it will enable us to see at a glance, what does that patient need in order to access our health care provision? 

[00:21:45] And we need to think a little bit further than that because we're not thinking about, well, how does that person come to the GP surgery and what can we do about that? What we need to be doing on the front line is also thinking about, well, how does that person access the secondary care health appointment that we've made for them as a follow up from our primary care appointment and make sure that we communicate that to secondary care. or wherever we've referred that patient to so they have that equal opportunity of moving forward in the system and taking forward their healthcare.

[00:22:18] In addition, we have what we call the LD Annual Health Check. That's an annual event that happens and is available for all patients age 14 and over. It's not mandatory, but the key's there. If you've got a free health check every year that looks at all aspects of your healthcare, thinks about your needs, and gives you an ability, an opportunity to engage with healthcare staff, why would you not take it?

[00:22:47] It includes a physical health check, review of current health, any concerns, any new symptoms and it also includes a medicines review. So it's an ideal opportunity for that healthcare professional carrying out that review to identify all the key problems that might arise for a learning disability patient. Right from applying reasonable adjustments up to identifying new illness and disease. 

[00:23:13] We also make a health action plan and that details what action should be taken by the healthcare professional and or perhaps the patient over the coming weeks and months. and any health goals that we might have set.

[00:23:25] So where we've advised the patient to lose weight and that's something they want to do, we might set up a plan for that which we can review. And just to remind the patient, we give them a copy as well as returning one within the practice. So that's a really useful tool. that we can all use and direct patients to throughout the year just to keep an eye on their regular health and their general health. 

[00:23:51] We can also offer structured medication reviews with GP practice pharmacists. We often term these as what we call SMRs and that will review medicines for that patient. It'd look at all the medicines across the board and we can think about each one in turn and how relevant they are to that patient today.

[00:24:11] We can stop medicines where they're not needed. And perhaps where we need to review by a GP, or perhaps secondary care, we can make that referral in where we're not sure about whether a medicine's wanted anymore. We can also carry out a STOMP review with the practice pharmacist. This is where we look at psychotropic medications that are prescribed for each patient. We can look at them for their relevance, we can stop them where they're not relevant. We can review and give review dates for the future just to make sure that all medicines prescribed for patients are relevant to that patient today. 

[00:24:47] We've also got a really key link with primary care liaison nurses and they are specific to LD management. So where we do perhaps have problems in engaging patients or encouraging them to uptake the annual health check, these nurses are key because they can build relationships with patients and encourage them to access healthcare. So please do, where you have that difficulty with this particular patient, refer to these liaison nurses because they may be key in getting that patient into the surgery and having treatment. 

[00:25:23] We've spoken about before that we have the Choice and Medication Mental Health Medications Informations leaflet. They are highly underused. They're in a variety of forms, in different languages, some with pictures, some with simple text, and some with perhaps more robust text that perhaps a carer might want to go through. But everyone can access those leaflets. and provide them for patients at the point where we're perhaps prescribing a new medicine or reviewing a medicine where we feel a patient doesn't know enough about it. So again, really useful.

[00:25:56] Irina: Thank you. I see there's, there's quite a variety of services that could be accessed, but again, I, I find us coming back again to, to that relationship with carers, with healthcare providers, with making sure we follow up on them, we check why haven't they attended. How are they getting here? Are they going to be able to go to the hospital where we try to refer them to get better help than what we can provide to them?

[00:26:21] So it's very much around relationships and us not giving up. And like you said, to start with, make sure we we make our program, um, around them and not making them fit into the 10 minute appointments that we very often try to do. 

Keeping up to date with LD

[00:26:37] Irina: What, what are the latest guidelines in managing people with LD? How and how often should healthcare professionals facing patients with LD refresh their knowledge on this?

[00:26:49] Alison: Well, there's lots of information online. We've all had training in patient to patient encounters within perhaps our degree study. We've all had that. We've all been you know, gone through the training and we've, we've perhaps done, um, real life consultations where we've been monitored on that, where we've been measured on that for our performance.

[00:27:10] So it's about really adapting your own style of how you deliver a patient consultation to an LD patient. Don't try and change it completely, but just work with what you see in front of you. That's the simple thing. 

[00:27:25] There's advice online, such as from NHS England, from NICE guidance, and one starting from NHSE, there's a clinical guide for frontline staff to support the management of patients with a learning disability and autistic people. And it's relevant to all clinical specialities, really easy to find online and a great starting point. 

[00:27:47] And it's how long is a piece of string really in terms of refreshing knowledge. Once you've done some training, once you've read up, it's about learning from experience and moving forward. The same as you'd do with any softer skills. 

[00:28:00] There's some specific guidelines too for the care management of patients with a learning disability. Such as those for growing older with a learning disability. And that can be found in NICE Guideline 96. And very supportive and detailed guidance can be found on managing challenging behaviour. Which is in nice guidance 11.

[00:28:18] The Oliver McGowan training will be coming in soon, and that'll be really, really useful. I'm very excited about that training moving forward. It's going to be mandatory for all patient facing healthcare staff, so this is right for clinicians to reception staff, and it will need to be repeated ,so you can refresh and revisit your learning, your knowledge, and perhaps review and add to that every time you repeat this training. this training will include an online version that's simply done as a desktop, but it will also include training from at least one person with lived experience in a face to face training module. This could be a live event, or it could be done perhaps over Teams. And again, it's mandated for all healthcare staff.

[00:29:06] Irina: Okay. So, sorry, Alison. So when you say lived experience, what do you mean? 

[00:29:11] Alison: A patient with lived experience, it means that whatever condition you're discussing, so here we're talking about learning disability, but say if you're talking about asthma, if you have a patient with a lived experience, in terms of a discussion about asthma, then that patient will have asthma.

[00:29:28] Irina: Okay. Okay.

[00:29:29] Alison: terms of clinical care, every learning disability patient is different and you do need to tailor treatment and review to each, as you would with a general population.

[00:29:38] The annual health check is again a great support here, not just to identify the need for preventative care and newly emerging health conditions, but to check that planned interventions and monitoring have been taken place. So it's a great tool for identifying anything that's been lost to follow up to, just in case patients haven't attended appointments and there's been missed intervention.

[00:30:02] But again, with the annual health check, when we put in reasonable adjustments, again, an ideal opportunity to do that at that point, at that annual event, any intervention then moving forward will be far easier because as a clinician, you've actually got written down what that patient needs. That might be help with communication. It might be help with attendance at the surgery. It might involve giving them more time for you to listen to them. It might be that they need a specific carer involved or they need to have a family member there. But that will give you support and guidance in how to manage that. So I think it's really important that we, as moving forward, we do continue to review patients to see what adjustments they need to access health care for the rest of their lives.

[00:30:52] Irina: Thank you, Alison. And just as a reassurance, we'll, we'll link and, um, notes below the podcast, all the guidelines and all the useful documents you've told us about. So if anybody wants to go back after listening to this to access, we'll, we'll have those, the podcast notes. 

STOMP and STAMP & medication review

[00:31:08] Irina: Okay, so how do we make things better? We've, we've been hearing about STOMP, STAMP for a few years now. Can you tell us again what the acronyms stand for?

[00:31:19] Alison: So STOMP stands for Stopping the Overuse of Medication for Patients with a Learning Disability, Autism or both. And STAMP stands for Supporting Treatment and Appropriate Medication in Paediatrics. So actually, it's about making sure that medicines prescribed for a patient with LD, autism, or both are appropriately prescribed.

[00:31:42] Irina: I see. So how often should we review or reduce their medication? STOMP is a good example of this. Overprescribing because it looks like the easy way out or because we're not sure how to better manage a situation.

[00:31:56] Alison: So medicine should only be prescribed to support the management of challenging behavior in accordance with NICE guidance. And we have a really detailed guidance, which is called NICE Guidance 11, Challenging Behavior in Learning Disabilities. So that's, that's the place where you would start. And it's important to mention that medication should only be used for very short term to support behaviour management plan that's already in place.

[00:32:21] It should only be used with appropriate behaviour management support and there should be clean, clear details of when to start a medicine, how to review and monitor a medicine and when to stop the medicine within that care plan. For all medicines, regardless of what the prescribed for the patient and or their carers should be fully involved at every stage of decision making and create that clear plan together. So details such as when to start medicine, how long they should take that medicine for and when the next review should be agreed. should be there, regardless of what the medicine is.

[00:32:59] Irina: I see. So how can we improve patient engagement? Do you think it will help if we raise awareness amongst primary care teams? How, what's, what's the best way to go about this?

Why patient engagement is so important & how to get that

[00:33:12] Alison: I think we do need to improve patient engagement, which you've touched upon, and I think there's many ways that we can do this. But taking a step back, if you look at statistics, say that we've got for screening, it gives you an idea about the values and understanding of patients. So in 2017 18, only around half of women with a learning disability were screened for breast cancer that needed it, compared to 68 percent of women without a learning disability. Less than a third of eligible women with a learning disability receive cervical smear tests. And again, that's in contrast to 73 percent of women with no learning disability. 

[00:33:53] Of all those eligible for a colorectal cancer screening, 77 percent of people with a learning disability were screened, compared to 83 percent of those without. I do think it's interesting that engagement was far better with remote screening, that's the colorectal because that's literally done with something that comes through the post, and that you post it back off, rather than screening that's invasive and hands on. So perhaps that gives you an indication that patients with a learning disability are a little reluctant to engage where it's something perhaps unpleasant that they have to do, and they have to be part of. 

[00:34:29] So it's really important that they understand consequences. frighten your patients, but in simple terms, they need to understand how important these interventions are.

[00:34:38] We have the same issue there as well with vaccinations, because patients, again, they often don't like needles, the needle phobic. So attending for a vaccination program, such as a, you know, the one that we've all been through quite recently and that we're all, you know, remember with COVID, it was very difficult to engage patients to have these vaccines.

[00:35:00] So that's something we always need to be mindful of. Every opportunity you have of engagement, even if it's about a different matter, if you see that screening or vaccination is outstanding, please, please, please. engage that patient to attend. 

[00:35:15] Thinking about this, the annual health check, again, gives an ideal opportunity for a quality review of healthcare and medicines. We can encourage these essential vaccines and screening and both of those things are vital in preventing ill health and disease. In my experience, it's the relationship built between the patient and clinician that determines the outcome of future appointments. Please bear that in mind and please try and develop those relationships accordingly. 

[00:35:47] We are very focused on improving uptake of annual health checks, I think as a nation, but that really is just a statistic. So we need to ensure that we are also building quality and work on this engagement aspect so that patients are encouraged to access healthcare when it's needed moving forward. and attend vital screening appointments.

[00:36:09] I really can't emphasise that enough.

[00:36:12] Irina: Thank you, Alison. It's um, it's really interesting to see the numbers and the point you've made about how they are much less likely to attend face to face appointments and specifically the ones that could be unpleasant because they just don't understand the consequences of not being diagnosed in time.

[00:36:28] It's just as you would try to make a child do something that they dislike, and they are completely against you feeding them that spoonful of antibiotics because they dislike the tastes. And I think once you, you try and change your mindset and you think, okay, this is how they perceive y'all. This is, we, I agree with you, relationship is probably the only thing that could maybe convince a patient who has this attitude, um, if they trust you as a healthcare professional, if they know you're their person that makes them better when their tummy aches, or they will probably do you, uh, and the testing that you require them to do because they trust you. Otherwise, there's no chance we can get them through the door. Is there?

[00:37:13] Alison: No, and basically everyone's different. So whether it be the LD cohort of patients, whether it be patients with other disabilities, whether it might be patients with heart problems, we're all different.

[00:37:24] Irina: Yeah.

[00:37:25] Alison: So you just go in with the attitude the appointment needs to be as long as it takes to get the right outcome, specific to LD.

[00:37:32] This might generally mean extending the appointment. And perhaps your surgery needs to think about how you can manage this as an organisation. Having more time will put the clinician as well as the patient at ease. And I've just simply found my way in terms of talking to people. So I've built on the skills that I've already got.

[00:37:52] And my attitude is to just start with saying something simple like, Hello there, how are you? the response and engage with the patient at the same level they speak to you. That's vitally important. 

[00:38:05] And I wouldn't advise to reinvent the wheel in terms of your own preferred consultation structure. Don't change too much about what works for you because you might skip something vital that way. It's about adapting what you already do, not completely changing it.

Where to find out more.

[00:38:21] Irina: Thank you. That's, that's very useful. So where do we get help? Like any, any charities, any local teams? Also, can you recommend any resources if the clinicians want to learn more?

[00:38:35] Alison: So yes, there's lots of resources out there and one of the nicest ones and really heartwarming is one by Mencap. They've got a really good video on YouTube and we'll post the link later and it's presented by patients with a learning disability and it gives advice on communication. And it's heartfelt because they do stumble on words. There's some long words in there that perhaps they don't know how to pronounce well. And their personalities really do come across. 

[00:39:04] But you will have learned lots in your training when becoming a healthcare professional. And patients are patients regardless of their skill level. And going back to that video, if those patients can reach out and support you as a healthcare professional, then you reach out to them and don't be afraid. We also have people with learning disabilities that work for NHS England and they can advise on it too. I engage with them over Teams lots of times. You know, I wanted advice for one of the meetings that I hold, that I'm chair of. I wanted someone with a lived experience to come and talk with us. And so we talked about how we might manage that, how we might put that patient at ease before they attended, what they might want to talk about, what's realistic to expect.

[00:39:53] And they give really useful advice. There's also many local and national organisations who have people with lived experience working with them too. Again, Mencap, 

[00:40:05] We all have search engines. You'll find lots of resources online. If you really want to learn, then you will. And many of those organisations, you'll recognise the names of them. Please do reach out and perhaps invite guest speakers to your team meetings of patients with LD who have that experience and engage with them in that context of a meeting because they get your reservations. They get how difficult some healthcare professionals find it to engage. And they'll bridge that gap very easily.

[00:40:35] A valuable resource.

[00:40:37] Irina: Oh, this is, this is a very good point. Okay. So to try and wrap our conversation up, what would you say, Alison, that the take home messages are?

[00:40:47] Alison: So in brief, because we've covered lots today, haven't we Irena? So LD patients are people. Don't categorise. Use the skills you have in terms of consultation, and go back to basics with undergrad training on consultation if you need. Also use those online resources. Give LD patients time and reasonable adjustments, put them in place and they're there for next time. And use that vital tool the annual health check as a mechanism to put improved health care for each patient in place using your LD nurses that are assigned to surgeries if needed just to help build up that relationship.

[00:41:27] Irina: Thank you, Alison. Thank you so much. I've learned a lot by speaking to you today and I'm, I'm very grateful for your time. Your knowledge and your experience with this clearly transpired from our conversation. And, um, yes our listeners will, will value our conversation a lot.

[00:41:44] Alison: I do hope so. Thank you Irina.

[00:41:46] Irina: Thank you.

[00:41:47] Munir Adam: Yes, absolutely. We do value that conversation. Don't we, guys? Listen, some of you might be thinking that it's all fair and good, but it's quite difficult to implement some of this, and a lot of barriers may come in front of you, like time, for example. We did actually do a few episodes focusing on time management in the first half of Season 2.

[00:42:11] Perhaps another way of looking at it is this, there's a lot of things going on in the world that we look at and we feel helpless, terrible things. We feel we can't do anything. Now, we're lucky to be in professions where we can make a big difference to people's lives, where we can really help, and never mind anybody else, what can I do differently? Isn't that what it's always about? It might be brushing up on the knowledge, it may be about attitude or approach, or it may be about spending more time or trying to understand, listening more. But you can do more for these patients and they need it. 

[00:42:44] The other thing you can do is provide some feedback on Apple Podcasts or wherever you listen to your podcast because it's your feedback that keeps us going. So please do that and share and let others know about it so that we can improve the provision of care that we provide to patients. And you know what, I think we find it more rewarding and so it'll prevent our burnout as well. But that's it for today, and our next topic in this mini series is going to be on those with mental health problems.

[00:43:13] So that should be coming up soon. But for now, keep well and keep safe.

[00:43:18] 

Disclaimer

[00:43:40] Munir Adam: Primary Care UK was developed by Therapeutic Reflections Limited to inform, educate, support, and unite the primary care workforce. Specifically, it is not for the general public or patients. All information and advice contained therein is time, location, and context dependent and is general advice only.

[00:43:57] No guarantees are provided with respect to the accuracy of the content. The hosts, contributors, and the organizations they represent do not accept liability for any actions, consequences, or effects that result directly or indirectly from the content provided. Please refer to the episode description.

[00:44:13] Thank you for listening.