My name's Sarah, and I am the Health Policy Officer at Mencap. I'm currently working on our response to the Inquiry into Dentistry from the Health and Social Care Committee. This is a really good opportunity to get access to oral health care for people with a learning disability on the agenda and I want to make sure that I cover all the issues.
We know that this is an area where things are really patchy - and I've heard examples of services doing this fantastically well, but also getting it very wrong.
This week, I'd like to invite you to share your experiences - both good and bad - from starting/maintaining an oral health care routine, to accessing check ups and getting treatment when needed - and if anyone is experiencing issues right now, with the help of the Helpline, maybe we can try to solve these together. I'm interested in both special care/community dentists, and mainstream services.
If anyone feels more comfortable talking outside of this forum, then I can arrange a call/email conversation, just let me know! Anything shared in the response to the Health and Social Care Committee would be anonymised.
Looking forward to hearing from you.
Sarah
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We have been lucky to have the support of the same dentist as my daughter has grown up. She was referred to hospital as opposed to a local orthodontist as he felt this was more appropriate for her sensory needs as well as her LD. Excellent support from all at the hospital including the LD nurse, even though surgery fell during the NHS cyber attack.
Thanks so much for your reply. That's great, how old is your daughter now? I'm trying to build up a picture of how people get referred over dental services, and it seems like that's one area where it gets a bit patchy, and seems that it may depend on where you live. So I'm wondering whereabouts in the country your are, and if you were you offered support with oral health care early on?
I'm in the Romford area (London Borough of Havering.) My daughter is 16 in a few weeks. We were offered oral healthcare support very early on. My local SureStart Children's Centre, as it was called then, had the support of a lovely lady called Nina, an Oral Health Promoter but I know she moved on before my daughter started school. She came to my daughter's dental appointments with me until she left & was a great support. My daughter's special school offers the support of the Brush Bus programme too.
My son has very complex learning and physical disabilities and has been living in a supported living environment for several years now. He has an excellent service from his community dental practice and both he and his support staff have a very good relationship with them. My son is sometimes uncooperative when having his teeth cleaned but his supporters have found innovative ways to encourage him and they work alongside the dental team when needed. At home his support team create a calm atmosphere and play relaxation music prior to cleaning his teeth and always try to use the same routine depending on his mood. If they haven’t been successful they handover that information to his following staff team who try again later in the day and most of the time it works very well. They keep a daily record in his health file. He has a dental checkup twice a year and I feel his oral health is very well taken care of.
Hello Redsails, thank you so much for your response. That's really great to about such good practice supporting your son to keep his teeth clean. Please forgive me for bombarding you with questions, but it's really helpful just to understand how people get to where they are - and how good practice can be encouraged. So I wonder, has it always been easy for your son to get the right support for his oral healthcare needs? Does he see a regular NHS dentist, or a Community/Special Care dentist? And also whereabouts in the country you are?
Hi Sarah, yes he’s always had good dental care since moving from children’s to adult services. He’s always used the community dentist who specialises in people with learning disabilities and is fortunate that the same dentists assistant and even the anaesthetist have been the same during this time although the dentist is now in the process of retiring (so inconsiderate of him 😉) but he’s on hand to pass on information to the new dentist. There are two or three dentists in the practice but my son has 9 times out of 10 always seen the same one. I think it’s good that my sons support team have a good relationship with each other and pass on any information between the team and us as parents that may relate to not only his oral care but his health care in general. We live in Merseyside and my son goes to St Helens dental clinic.
We go to the dentist at our local health centre,they are fab and really take the time to give you any advice or help you may need,although Levi still won't let you clean his teeth,he did at one stage but i think its to do with sensory,but he will let you put a tiny bit of toothpaste in his mouth,so we will just have to keep trying.
Hi there, thank you so much for responding to my question. I really appreciate it. Great to hear about the support at your local health centre, is that a regular dentist or the community team? Have they supported you at all to help you find strategies to help Levi manage the sensory issues around cleaning his teeth? It seems that's a really common issue, and whilst perseverance is key - there is lots of experience around to draw from. As I've asked the others, it would also be really helpful just to have a rough idea of whereabouts you are actually. Nothing too specific needed though - online safety/anonymity and all that! Best wishes - Sarah
I am,from county tyrone,the dentist at 1 stage seen everybody but now you have to be referred by health visitor as they have alot of patients,Yes they have given me lots of different ideas to try and lots of different toothbrushes also but it hasn't worked.
Hello Sarah my son is 32 with severe Ld however he is good at talking and mostly independent at dressing but has no good coordination for brushing his teeth or washing and bathing.
We belong to a lovely dentist who also has a daughter with downs syndrome. He changed from NHS to private and Denplan over 20 years ago but we continued to see him and joined Denplan.Denplan is expensive for me and my wife because of our teeth but my son also joined at a cost of about £11 per month and with this he gets 30 mins clean and polish every 4 months with a hygienist who really copes well cleaning his teeth.The dentist sees Thomas every 6 months and also works well with him.
Thomas broke a tooth and the dentist eventually replaced it with a crown which treatment was covered by Denplan insurance but would have cost £400+ .We are grateful to have such a good Private Dentist.On another note we live in an area where there is a NHS Dental Access clinic which I have been told is very good. We may be lucky with Thomas because we both knew the other side of the NHS having worked as nurses.The hospital have always let me in when my son(Thomas) had investigations and care.Our local GP surgery is excellent because he has regular blood tests and flu vaccinations.Thomas shows no outward signs of fear or anxiety and is uncomplaining of pain but we have never shown that he should be frightened.We have always explained in layman's terms what is happening..He has always been treated with respect and kindness but I would have been there for him if anything other than respect was shown!
Thank you for taking the time to respond Charlie. Good to hear about Denplan - that's great that it enabled you to carry on seeing the dentist that was able to meet your family's needs. Can I ask about whereabouts you are in the country please? Sounds like they are getting things right across the board!
My son is 6 and has Autism. The thing that is working for us to help establish a teeth brushing routine is a podcast called Chompers. It’s on morning and night and lasts about 4 minutes long. It gives the kids instructions about how to brush their teeth whilst telling them facts or jokes, etc. Each week has a theme for example coding, back to school or history which my son (at the moment) loves.
In addition to this our family dentist let’s us organise family dental appointments where myself and my husband will be seen by the dentist first and my son can watch what is happening and then have his turn after.
Our dentist has also said we can pop in whenever we like to have a look around and get used to the sights and smells and faces. This helps ease some of the anxiety my son feels around oral care and attending the dentist.
We have also watched videos about dental visits - the CBeebies Dr Ranj on Get Well Soon has a good one if I remember right.
Thank you so much for your response. I hadn't heard about Chompers before - I've just looked it up and it looks brilliant. A friend of mine does something similar for their son but uses Sesame St videos! That's great to hear your dentist is so on top of helping him understand what's going to happen with the family dental appointments and the visits.
My daughter, aged 35, has had an abscess on her front tooth for some time now and has not allowed anyone to examine her. Her oral hygiene has never been great but she has been much less compliant since the abscess made teeth-cleaning painful.
She sees a special care dentist who, after two 'flare-ups' necessitating antibiotics, & lots of pressure from me, has started the process to put her on a list to have dental treatment under a GA in hospital. However, it sounds very rigid and not at all person-centred and I fear that it will fail.
So the delay in putting my daughter on the 'list' is one concern. Having had an abscess myself (and getting prompt treatment for it), I can only imagine the pain and suffering that this is causing her.
The timing of the procedure is another big concern - I'm advised that my daughter, who has severe LDs, severe challenging behaviour, severe autism and complex needs, will not be able to eat anything from midnight prior to admission, which I understand, but she won't be seen until the afternoon. This will throw her completely as she is obsessed with food and any delay in getting food will very likely lead to meltdowns, which can be very severe, with disrobing and self-harming etc.
Another concern is that the hospital does not have a dental X-ray machine due to funding constraints. I believe that they allow the dentist to plan treatment but they are expensive and take up a lot of room. It sounds like a particular hospital room is rented for day cases like my daughter's, hence limited resources.
Yesterday I met with the dentist and signed 'Best Interest' forms for 'radical' treatment, which the dentist informed me could involve removing all her teeth. With the limited range of treatments available (e.g., the root canal treatment that I had for my abscess is not available) there is no chance of saving her tooth and if the dentist suspects decay in other teeth, they will be removed too. There is no chance of my daughter tolerating any restorative or prosthetic dentistry. At best, she will have obvious gaps in her front teeth; at worst, she will lose all her teeth. I feel very unhappy about this and I would like some advice on how to challenge the current treatment plan.
I don't know if Bella Travis is still your Press Officer. I'm happy to discuss our experiences with her too - we have been involved in other MENCAP press campaigns in the past.
I'm really sorry to hear about all the problems you are having. It all sounds extremely difficult.
I would like to help you to get some advice from our information and advice team. They will be able to discuss challenging a treatment plan with you and also asking for reasonable adjustments at the hospital to meet your daughter's needs, for example, going first on the list (and not waiting til the afternoon). They can give you advice on how to escalate your concerns if necessary. I have flagged to the team that you may be in touch.
You can either contact them on 0808 808 1111, or you can leave them a message using the webform: mencap.org.uk/contact/conta.... Alternatively, you could email me at sarah.coleman@mencap.org.uk, and I can refer you across.
Hi there, I was just looking for info on how special needs people have been treated. I have 2 sons aged 29 and 21. From an early age I had them under the London Dental Hospital. They would not have tolerated the local dentist. So all those years ago our GP directed them to there. We had a problem at first as the Consultant we saw just relied on us, as parents, to tell him if we thought there was any problems. Also he never attempted to even look into their mouths or speak to them reassuringly. My boys aren't aggressive but they do seemed stressed (as I feel myself). I thought it was a pointless exercise even going there, so I made a complaint. Thus we got a much better consultant, with much more understanding and they seemed to like her. The only problem was, if our boys needed anything done, apart from a filling, it just seemed the only option was to extract.
I couldn't believe this. I'd thought a Dental Hospital would be great but over the years I got really disappointed. My younger boy whose teeth just seemed to be rotting from the gum was having too many extractions. I spoke to them about it but they just looked at me pathetically and said unfortunately they couldn't do much about it.
Every day when cleaning their teeth for them, my heart feels wrenched as I can't take them to a usual dentist. When the younger one was 18 and had a front tooth extracted, the surgeon who we had never met told us he would now "be put out into the Community" and wouldn't come to the hospital. I felt very upset and helpless by this. But I feel my hands are tied.
The few times we have been to the Community Dentist, who do not send appointments, we have to ring and then wait a long time. They look at their teeth quite well but they would not do any treatment there apart from maybe scrape any placque. I am constantly worried if there is an emergency they will get no help. I feel it has been a losing battle all their lives apart from the few years before the good Consultant retired.
I am wondering if there is anywhere in East London that has good facilities to go to. I'd rather pay than have a service of extracting. I spoke with another dentist in charge at length the last time we went to the hospital. Can you believe there is no service there, even if we want to pay for it to have an implanted front tooth.
I stress everyday about this matter as it is out of my control.
They have never had a fizzy drink in their lives and don't have horrible sweets. This is why it hits me so hard.
Hi Kim, thanks for replying to this thread. I'm sorry to hear that this is causing you so much worry. I would like to get some advice for you about what to expect from oral health care, and what options are available to you. I'd urge you to get in touch with the helpline, as with some more details we can probably give you more useful information - but I will also post some suggestions here as it may be useful for others to see.
here in wolverhampton the special needs dental service have been brillant, you can self refer by phoning the two clinics which serve either side of the city. Dentists and dental nurses fantastic. They send a reminder for my daughter every 6 months and do the check up on one day and then arrange treatment over a series of weeks if needed. If i phone up saying that she is pain have also been given a appointment at one of the clinics that day and treated. she is also treated with respect and dignity every time and I know that other carers feel the same way. My daughter is now 29 she has been attending the service for 9 years and has excellent oral health because of this service.
Thanks for sharing - the Wolverhampton service sounds brilliant!
I've spoken to lots of people about oral health care in the past few months and (perhaps unsurprisingly!) one of the keys to getting it right seems to be when services really get to know people.
Did she use the same clinic as a young person, or did she have to use a new service when she became an adult? If she had to move, did they support you both to access the new service?
My son 20, autism and SLD has a hole in his tooth. I took him to the dentist at the RSH last October. They agreed he needed a filling under GA. It’s now a year later and we have heard nothing at all, he has a dental appointment this month with his regular dentist. Looking at the tooth now and bearing in mind his learning disability i think it will need removing completely. He’s non verbal so I’m not sure if he’s in pain. Im upset because he has lovely teeth and has never needed anything done. He’s not keen on brushing and it’s been a real battle to keep them nice.
Sorry to hear you're having difficulty accessing treatment for your son. Did the dentist at the RSH (Royal South Hants?) put him on a waiting list for treatment do you know? There can be really long waits for treatment under general anaesthetic, and we've heard of people waiting this long - however the commissioning guidelines from NHS England suggest that the wait should not be longer than 18 weeks for treatment under general anaesthetic, and no more than 4 weeks if clinically urgent. Some patients are also suitable for treatment using IV sedation to avoid the use of a general anaesthetic and I wonder if this option is worth exploring/available to you.
I'd urge you to get in touch with our helpline who may be able to give you some further information, advice and support with supporting your son to access dental treatment.
You can either contact them on 0808 808 1111, or you can leave them a message using the webform: mencap.org.uk/contact/conta.... Alternatively, you could email me at sarah.coleman@mencap.org.uk, and I can refer you across.
She said she was going to and it would be about a year wait but we’ve had no letter even with a date. We are seeing the regular dentist on the 18th so I’ll ask again then and if no luck I’ll definitely contact the helpline.
My adult son with learning disabilities has been in care since he was fourteen. When at home he had excellent teeth and went to the dental hygienist every three weeks when aged about eight or nine if I was finding it difficult to clean his teeth. He became more used to having his teeth cleaned and I used to use picture symbols and social stories to help. However, at one time aged thirteen or fourteen I had not been able to clean his teeth for a day or two and did get a bit overly enthusiastic and we had a bit of a physical struggle in the confined space of a downstairs toilet with toothpaste everywhere, and a young male support worker was witness to all this. But because of the overall good bond and co-operative working relationship (on the whole) that we had this incident was overcome and worked through and he allowed me to continue to clean his teeth. I was always working towards him doing it himself too.
When he went away I didn't give the care homes and support workers specific directions about how he liked to have his teeth cleaned and they took over and used their own routines. His teeth were looking worse, but not completely atrocious. Now, however, as an adult of twenty-three and having lived in this care home for five years with constantly changing young support workers his teeth are very bad, sometimes black as if he has been eating soil, and with caked on plaque even on the front teeth. He got a chipped tooth about two years ago that no one could explain to me how it happened.
The visits to the dentist aren't very well done as the young dentists don't manage to gain his co-operation to give them a clean up, and the support workers at the care home, even though given some literature by the dentists just put a tooth brush in his mouth and leave it there apparently, as if he can do it himself. I explained that he needs it doing for him, but very few of them have the skills to do this.
I'm so sorry, somehow I completely missed your post, and have only just spotted it as I was alerted to the message from GrimeFan, below.
Sadly, your son is not alone in not having his oral health care needs met by care homes. The recent Smiling Matters report from the Care Quality Commission found that these issues are widespread. You may be interested in having a look: cqc.org.uk/sites/default/fi....
There are also NICE guidelines about oral health in care homes here: nice.org.uk/guidance/ng48 . Unfortunately though, as you'll see from the CQC report, awareness of these guidelines is low. However, both of these documents might prove useful tools to have a conversation with the care home manager. You may also be interested in section 4 of these oral health guidelines from the British Society for Disability and Oral Health: bsdh.org/documents/pBSDH_Cl...
For some advice and support about how to raise this issue with the Care Home Manager, do get in touch with the Learning Disability Helpline on on 0808 808 1111, or using the webform. As I've mentioned to Grime Fan, do also check the care plan, to ensure that his oral health needs are adequately covered, if not, you may need to request a review. If you remain seriously worried about your son's oral health, and do not feel that matters are progressing, despite raising concerns, then I would seriously consider raising a safeguarding alert with the local authority stating neglect. The local CCG also have safeguarding responsibilties, and if his care is commissioned through CHC, then you could try to raise it with them too.
I hope this is helpful - and I hope that you manage to resolve these issues soon.
Sounds like they can't be bothered to clean his teeth. They've got nothing to lose being lazy. What a shame, I feel for your son and you. Despite always looking after my sons teeth, I think their problems have been through compromised immune systems over the years. Another big factor is the vitamins absorbtion not reaching where it should. We feel we've had to muddle along and buy in any help we wanted. But I know there is going to be no better dental service. I have no confidence in them. They recommended Vitamin D a little too late down the line, after lots of extractions.
Hi Sarah,I am 35,i have LD,classic autism,life long epilepsy etc and I have only ever tolerated going to the special needs community dentist.
She did home visits with me a lot at my residential home but my mouth was a mess due to severe fluorosis (I obsessively ate toothpaste through my life)so she wanted me to come to her clinic.
They tried it with me and all I’ll say is they didn’t try it again until years later,lol, she saw me in hospital,I was allowed to wear my own clothes as I have big issues with change and I was given my own room.
They did all checks and any work under GA.
I was given something I like when I got out,so for me that was computer games,Thomas the tank and Breyer horse stuff.
Even though I have staff with me constantly day night,My staff don’t help me with teeth here apart from odd prompting,I need physical help.so my mouth has got even worse and my parents are going mad, it’s because this company require nursing staff come in to do any personal care ,it’s not fair,i am missing lots of front teeth but my dentist didn’t want to do fillings as they could destroy more teeth if I punched my face again,however a good side to that is I’m not biting my tongue as much as I was during seizures because there’s space for it to go.
Unfortunately my dentist retired, and I was moved to a different borough,I was immediately swapped to their special needs dentist,but the first visit there, they had my needs and
they decide to a fire alarm test whilst my appointment is due and I fell to the floor and had a life threatening tonic clonic seizure,the dentist put me on oxygen and I slowly came round,not the best introduction.
Wow, what a mix of experiences. I'm sorry hear about your experience at the new dentists - I can't believe they did a fire alarm test while there were patients in the building! Particularly when you'd assume lots of their patients would have sensory needs. I hope you felt able to talk to them about them and seek reassurance that it wouldn't happen again. If you need any help having that conversation then I'd recommend speaking to the NHS Complaints Advocacy Service: nhscomplaintsadvocacy.org/
It sounds like maybe you are in supported living at the moment? As you say, they can ask people to come in to give you that kind of support. If you feel you have unmet support needs, then I'd really recommend asking for a review, particularly if the kind of oral health support you need is not in your care plan. If you contact the Learning Disability Helpline they should be able to help you with any questions you might have about how to do this. You can contact them on 0808 808 1111, or you can leave them a message using the webform: mencap.org.uk/contact/conta....
I hope that's helpful. Thank you so much for taking the time to respond to my post.
My brother is 57 and has severe learning disabilities. He has been living in a residential care home since 2004. While he was living in London until end 2017 he attended Guys Hospital for his dental care. As it is very difficult to clean his teeth properly he had 3-monthly Check-ups. Unfortunately we had to move him closer to family having experienced Problems with his care in the care home. Since moving he is no longer able to attend Guys Hospital as he now lives outside London. He attends a hospital dentist for learning disabilities. After his first check up they confirmed that his teeth were in good order but they will only provide him with 6-monthly check-ups. We have had to repeatedly complain about mouth hygiene to his new care home as he frequently has bleeding gums. He has frequent overnight visits with family therefore we are able to monitor this problem. We believe they leave him to clean his own teeth but he is not able to do this with any effectiveness. We are concerned that given the lack of attention to mouth hygiene and less frequent dental checks it is only a matter of time before he develops problems with his teeth.
Sadly, that is not the first time I've heard a story like this. Oral health in care homes is known to be an area that is greatly in need of improvement, the Care Quality Commission even investigated and wrote a report about it: cqc.org.uk/sites/default/fi...
We could support you to raise these concerns with the provider, and the commissioner, and make sure your brother has the right oral health care in place to keep his mouth healthy, and free from pain. If you drop the Learning Disability Helpline a message, or give them a ring, they'll be able to help you. I'll let them know to expect you.
Unfortunately my brother's care home is presently in lockdown due to COVID-19 and has been since before it became official. My father ordinarily would have my brother stay with him most weekends but dad has underlying health conditions and is in isolation himself so we are unable to monitor the situation ourselves.
Given the pressures on care homes and staff at the moment I am holding back from pursuing this matter although it is an outstanding issue from a list of complaints we were trying to get addressed since last year. The CQC and social worker were involved following a Safeguarding incident although this is the second time we have had to involve them (the first time at the previous care home), we have found that the care service, CQC, and social Services seem to work together to appease relatives and not necessarily to resolve the problem. Dad and I are going to make a Personal Welfare Deputyship application with the help of a solicitor as we have been trying to get problems resolved for over a year now. Whilst some things have been addressed others have not to our satisfaction. Unfortunately I began to address outstanding issues again as COVID-19 started but had to pull back as the problem became more serious.
There is a sense we need to keep the care service on side until we have the deputyship in place. It might be useful to get advice on this from the helpline and I shall contact them once I receive our solicitor's update, due in the next few days.
Hello again - that all sounds very difficult. The helpline will be able to help give you information and advice around all of this, and the support you need to escalate your concerns/take action where necessary - please do get in touch when you feel able.
Hi Sarah ,I have a real problem with my older son brushing his teeth since he became ill in March 2020.
I had to physically stand next to him and get him to brush his teeth with tooth paste .Even then he will brush for 30 seconds and says that's all he's doing and he's 23. I am a bit lost how to get him to brush longer .He refuses his medication so I put it in a desert and give it to him .I feel bad I give him desert as he's not brushing properly but if he doesn't have his medication he can become quite ill. I took him to the dentist and she saw that his back molar has a crack .He wouldn't let her put the x-ray card in his mouth because of discomfort. Last time he had a tooth out it was in the hospital where he had a gas to put him to sleep as he won't have injection . He used to be better at bushing before he became ill .
As the mum of a young person with Learning disabilities I am concerned that since the start of Covid he has not been invited to attend for a check up. Since he was tiny he has been going to see an excellent NHS dentist who has a lovely manner and who he knows and trusts but my concern is that Covid has been used as a cover to push more NHS dentists to become private and it feels like this is what may have been happening at our dental practice. On the rare occasions when we have been able to contact the practice they just say that the restrictions mean that they do not have the capacity to carry out NHS check-ups. It has been 2 years now since he last had a check-up. I wonder if this is something other people are experiencing
It's fantastic that you created this topic for people to share their stories. That way, they can express their emotions. Many people don't have somebody to talk to about their troubles, so they have to keep it to themselves.
Since many people share their experiences, I'd want to share mine. It's about a good one. I went to the dentist because my tooth was hurting and I couldn't stand it any longer. Also, I thought it would be good to straighten my teeth if I'm already going to treat them. And the dentist advised me to use this - smiledoctors.com/treatment/... because my teeth are not very crooked, and it's unnecessary to get braces. I'm not wearing it for much time, so I can't share my opinion about it, but I think I'll do it later.
Hi Sarah. Up until recently, when we moved house, my daughter (28 years old with Downs Syndrome and significant learning difficulties) received reasonably good dental care through NHS dentist practices. We were unable to find an NHS dentist in our new area. A dentist at a local private practice refused to even examine her teeth, but did refer her to the dental clinic sited in our local "cottage" hospital. I felt relieved. However, having had a second six-monthly check-up at the dental clinic only a couple of weeks ago, I now feel disillusioned about the level of care. The examination (almost solely visual) was very brief (less than a minute), we had the same questions about the type of toothbrush used, and observation was made of the build-up of plaque on her front teeth. I mentioned concern about access to effectively brush my daughter's molars (she has a small mouth and oversized tongue) - this was met with a "mm". No offer to clean her teeth and no mention of any follow-up appointment or when the dentist would next see her. We spent longer walking up and down the stairs to reach the clinic than my daughter did in the dentist's chair!
I am a parent of a 35 year old and am currently supporting him to have a denial implant in Hungary. This is not a choice I would have made if it was offered in the UK at a reasonable cost. He relies on b disability benefits and would, under the NHS, have qualified for a dental plate. He is 34, epileptic amongst other things and I felt this option was dangerous and undignified. As things stand I can help him look after his teeth but like many other things, am concerned that I can't do this forever.
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