Oral health care and dental services - what do you ... - Mencap

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Oral health care and dental services - what do you think?

Sarah_Health_Policy
Sarah_Health_Policy
26 Replies

Hi everyone,

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

26 Replies
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FilmMusicFan

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.

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Sarah_Health_Policy

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?

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FilmMusicFan

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.

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redsails

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.

Redsails

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Sarah_Health_Policy

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?

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redsails

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.

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Sarah_Health_Policy

Thanks, Red Sails. That's great to hear that he's had such consistent care. I hope that things go smoothly with the new dentist.

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partygirlz1972

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.

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Sarah_Health_Policy

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

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partygirlz1972

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.

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Charlie2750
Charlie2750Community friend

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!

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Sarah_Health_Policy

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!

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Charlie2750
Charlie2750Community friend

We live in Taunton Somerset.

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Bigshorty

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.

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Sarah_Health_Policy

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.

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JanePA

Hi Sarah,

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.

Thanks

Jane

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Sarah_Health_Policy

Hello Jane,

Thank you for responding to my post.

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.

Best wishes

Sarah

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June1967

Hi Sarah

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.

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Sarah_Health_Policy

Hi June,

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?

Best wishes

Sarah

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BenjiB

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.

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Sarah_Health_Policy

Hi BenjiB.

Thanks for getting in touch.

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.

Best wishes

Sarah

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BenjiB

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.

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Henriet

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.

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Sarah_Health_Policy

Dear Henriet,

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.

Best wishes

Sarah

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GrimeFan

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.

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Sarah_Health_Policy

Hi GrimeFan

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.

Best wishes

Sarah

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