Autistic stroke sufferer - advice re care

My severely autistic brother suffered a stroke 2 years ago and is now in a nursing home. He is PEG fed. When the PEG was initially fitted, we were warned that if it was removed, and the site closed, there would be a finite number of times that it could be replaced. He has now lost it for the second time since he has been at the home (he had already lost it twice while in hospital). The learning disability nurse at the hospital where he was initially treated was extremely helpful, but is only in a position to advise the home (who didn’t seem to recognise that she should have any role). Even with the best of care, there is no guarantee that a PEG will not come out, but the home were advised to include in the care plan emergency procedures that could be put in place to keep the site open. This has not been done, but the home tell me that the site closes too quickly for anything to be done. Does anyone have any ideas of anywhere I could go for advice? I don’t have the medical background to know whether the home should be doing more. Although I have issues with the home, who see no need to make any particular adaptations for my brother’s autism, it is a lot better than most of the homes that were suggested for him. Patients are generally younger, and the carers have a very positive approach to quality of life. Nevertheless, if we get to the point that his feeding tube can no longer be replaced, there will be little more that can be done for him. At the moment he his being fed by ng tube (through his nose) and is extremely miserable, while waiting for a hospital admission to replace the PEG.

You need to avoid unnecessary operations for your brother, and the care home needs to have a plan in place. Typically this will involve putting the PEG back in the hole and taping it on as a temporary measure. Our son had a PEG which would fall out from time to time when the balloon burst, and he always carried with him a spare one that the carers were trained to replace - a surprisingly easy job. We did have a battle to get this all sorted as the original useless protocol involved a trip to A&E - do not think that everyone there knows how to replace a PEG. Any sort of half decent risk analysis will conclude that your brothers carer’s need to be trained to do this.

Thank you! This is pretty much what I thought. Unfortunately the home seems to be very resistant to any outside input. When I’ve asked about it, I’ve just been told that it’s unfortunate, but the stoma just closes too quickly for them to do anything. They are, of course, quite sure of their ground. What I could really do with is is someone who they have to listen to - I’m not really sure where I can go.


You mention a Learning Disability Nurse at the hospital but there should also be some within the local community LD team. Due to the serious nature of his health issues, I would expect him to have one allocated to him, even if this is not permanent but at least whilst there are on-going issues. This nurse would be able to advise the home, make sure they have the relevant information in place for staff, provide support at appointments if required and attend the annual review if health issues are an important on-going factor (which they are in this case). If your brother’s home is in the same county as the authority that are paying for him, then the nurse would likely be in the same team as the LD social Workers. If he is placed in a different county then the nurse would be based within the county which he is placed, even though his Social Worker wold be with the placing authority. Does he have a Social Worker? If so could you ask them to put in a referral for a Community LD nurse? If you have problems getting one, you could always get him an independent advocate to fight for this. He needs someone with the relevant expertise to be checking that the home is doing all they should.
Best of luck.

Thank you. I might have another go at the social workers. I think he theoretically has one, but the only meeting was cancelled! I know they’re stretched. They’ve also told me that it’s difficult as he’s 100% CHC funded, so they can’t tread on the health peoples toes?

Can I just check your brother has a balloon PEG? - such as a low profile mini button? When it comes out the stoma does begin to close but reallly you have plenty of time for replacement. To keep it open re-inserting the (collapsed) balloon that has just come out might need a little gel but we never found it to be a problem. The only issue might be if it came out at night time when it might not be spotted quickly by carers.
You need to get the dietitian involved. A balloon PEG will need to be replaced regularly anyway, as the balloons do deteriorate in time (they are after all sitting in an acid environment) and the regular replacement is a fantastic training opportunity.


Hi there, I am an LD Nurse, normally the home staff should be trained in placing a new balloon tube. In our area we have a nurse linked to the company who provides the feed and equipment, in our case it’s Abbot’s, this PEG nurse comes out with any problems and to fit a new balloon tube every 4 months. Also, if it is in day time hours will do an emergency one. Like said before if it is noticed coming out, then it can be inserted into the stoma site immediately then taped until someone who is trained can replace it. If it keeps getting pulled out, then maybe it may be worth considering a more permanent bumper tube, which will need to be placed endoscopically rather like the first one he would have had when he first had the feeding tube placed . Definitly push to get community LD nurse support as this is input is even more important due to being CHC funded. Just an idea. Jaq

Obviously this is not good care - they seem to ignore advice about the stoma and do not take his autism into account which is vital. It is possible to alert the Care Quality Commission ( who may decide to inspect the home and make recommendations for improvements. This can be done anonymously.

Thank you all so much for taking the time to reply. I have emailed social services in the hope (?) that they may be able to help with a community LD nurse. I’ve been talking about a PEG, but my brother actually has a RIG, which I understand to be essentially the same, other than being inserted by radiology. Inserting the feeding tube the more usual way turned out to be, for some reason, physiologically not possible. This does, unfortunately, tend to mean a longer wait for things to be sorted out as waiting lists for appropriate slots with radiology tend to be longer. Although paralysed on one side, and permanently wearing a mitten on his good hand, my brother is pretty good at interfering with his feeding tube (hence the number of times it has been replaced before). He still has a normal tube, although the home has been requested, when appropriate, to replace it with a “button PEG”, which can apparently be covered with a belt. This was first asked about when he first moved in, almost two years ago. He is funded for one to one care, because of earlier attempts to pull out the tube, but I am assured that, this time, it just “came out”. I will be asking the LD nurses at the hospital that he has been referred to, for further advice, but as the one from the previous hospital became so frustrated, I have no great hopes that they will be able to do any more. The LD nurse who helped before told me that as her role is advisory, she had no power to insist that the home followed her advice. Would a community LD nurse carry any more weight, or would she be in the same position?

Your brother is very lucky to have you as a passionate advocate on his side.

Completely agree with all the other helpful posts here. My background is speech and language therapy and safeguarding adults - so I’m just adding a couple of points from that perspective

As everyone else has said, I would definitely make a referral to the Community Team - the LD Nurse should be involved in looking at the options and facilitating decision-making. The Nurse should also be looking at the reason the tube is coming out (if it is not always to do with fiddling). Coughing, sneezing, vomiting all can dislodge PEGs (and presumably RIGs), so I would think the team need to be looking at why this is happening. Hopefully the LD Nurse would be able to support you in liaising with the care providers as well. The Mental Capacity Act is the legislation which should give you and the Community Team some weight, if you feel that the care providers are not taking action in your brother’s best interests.

How much is your brother able to be involved in the process? It sounds from what you say that he perhaps isn’t able to understand the consequences of either having the RIG or pulling it out. Presumably, if the Gastro team felt that he couldn’t make the decision about having the procedure, they assessed him as lacking capacity to make that decision and held a best interest meeting which involved you and other family members as well as those providing his care to agree what was the best way forward.

Given how stressful the repeated reinsertion must be and the restrictive effect that must have on your brother’s life, the GP and home need to arrange another Best Interest Meeting involving you and any other family members to look at what the least restrictive option is in moving forward, This is also something the Community LD Nurse should be able to facilitate via the GP.

I would also be looking at how the 1-1 support is working with him, is she / he providing distractions, and looking at what will improve your brother’s quality of life or just observing passively? Are there particular activities like music, sensory objects which your brother enjoys. The fiddling may be a sensory activity for him - could something else be provided that serves the same function? A higher level of engagement may help to reduce fiddling.

While I’m sure you want to retain a good relationship with your brother’s care team, If you do feel they are not working in his best interest, there is the option of speaking to CQC anonymously as someone else suggested, or of raising a safeguarding / quality alert with the local Safeguarding Team (you can usually find the details via the local Council website) .

Here is some more information about the Mental Capacity Act which may be useful in helping the care providers to recognise their responsibilities. It’s a comprehensive easy read summary which means you don’t have to look through the whole document

Sorry for the long post - just remembered this! Not sure it will be much help though in this situation. - this is an accessible leaflet about PEG, but it doesn’t deal with fiddling/ pulling out I’m afraid. If your brother is able to benefit from info in this format, the local learning disability team may be able to help with this too.

Good Luck. I hope you are able to get some support in helping your brother.

Thank you for another very helpful reply. I’m feeling like a pretty ineffective sister at the moment, but it does make you think about those who don’t have family.

I’ve emailed the senior social worker who helped me get some help with my brother’s finances (another very long story) asking about an LD nurse. If they can’t/won’t help, I shall have to try another route. I’m also planning to ask the LD nurses at the hospital he will be going to for his RIG if they can advise.

My brother, although physically reasonably fit until his stroke, has always been severely autistic (non verbal), so no, he doesn’t have capacity - or any idea about the consequences of pulling out feeding tubes! We had a best interest meeting in the hospital before his first RIG, and when it is in place,he does have some quality of life. His carers are generally pretty good and relate to him well. Obviously some are far better than others at engaging with him, and the team is far too large for someone with autism who likes consistency but this is something that the home is unable/unwilling to adapt to. The other residents are a mix of ages, and the nursing home does cater for younger people, so at 56, he enjoys plenty of outings which he seems to get something out of. The challenging behaviour of earlier years had mellowed when as he grew older, and, despite my fears, hasn’t returned following his stroke, so he is generally pretty easy. He is funded for only because he pulled his PEG out a second time during his initial hospital stay. There were originally plans to send him to places with staff ratios of about 7-1 (or lower), which would have been awful. There is obviously more they could do to improve his quality of life, but I’m trying to fight one battle at a time. My understanding (which could be wrong), is that there is a finite number of times that the RIG can be replaced if the stoma closes, because after the site has closed a new RIG needs to be in a new place. Without a RIG, we would be back to “Best interest” as he finds ng feeding so distressing that my personal feeling is that, while it may be acceptable short term to get him to another RIG operation, it’s not something to be thought about long term.

I’m happy to accept that the feeding tube just came out this time - it’s over a year since the last time it happened. He doesn’t get much chance to “fiddle” as he has his 1-1, and wears a mit on his good hand to prevent him using it (something else I’m actually not that happy about - but that’s another issue). The problem is that I’m not convinced that the home shouldn’t be able to keep the stoma open but, without professional knowledge, it is difficult to argue with the matron when she explains, very authoritatively, that they close far too quickly for anything to be done.

I will see if I get anywhere with the social work team, or the LD nurses at the hospital. Failing that, I probably need to approach cqc, though my brother is far too identifiable for that to really be anonymous - and they do say they can’t take up specific complaints. You mentioned using the GP, but the home has it’s own GP who is very difficult to get hold of and not particularly helpful. Last time, both I and the LD nurse from the previous hospital left plenty of messages to check that the referral was for a RIG, but I was called, seven weeks later, to ask to give consent for a PEG - with a consequent re referral! So I expect no help there.

Sorry for rambling on. The various suggestions and links everyone has provided have given me a lot to think about. I am hoping that, if I can be put in touch with the community team, we will be able to find a way forward. If not, I shall be reading all your replies again to work out what to do next.

Stick to your guns and do not accept that the stoma closes too quickly for anything to be done. You may want to consider becoming a Deputy (Health and Welfare) for your brother, as I was with my son. It gives you a lot more clout which is backed up by the Court of Protection. You can act to prevent treatments which you think may be harmful and also act to ensure that treatment that is necessary is provided.
Becoming a Deputy (Health and Welfare) is not as straightforward to get as being a Financial Deputy but if your brother lacks capacity but makes his feelings known to those close to him it is a very good solution.

Thank you again! I do need to look into becoming a Deputy, but I don’t think it would make a lot of difference to this particular problem. The issue is having someone with the professional authority to challenge the view of the home.

We’re making progress though! The LD nurse at the hospital my brother will be going to has proved extremely helpful. The one we dealt with at the hospital he was admitted to after his stroke was also one of the most useful people I have dealt with - they obviously get good people. We have a date for the RIG, which is the first step. He has also referred Peter to the community LD nursing team. This would usually happen while a patient is in hospital, but under the circumstances, he wanted to get it moving earlier. We both think that, at least initially, this is the way to go. If they can get the home to take the right steps, that will be wonderful. The home has a lot of good points, so I don’t want to use the more drastic routes, unless it’s necessary. If that doesn’t work, then I will need to escalate it, either through Safeguarding, or through a formal complaint and referring my concerns to CQC. I’m still hoping that won’t be necessary, but at least I now have some idea how I can escalate things, should it be necessary.
I’ll see how it goes and keep my fingers crossed. Thank you again for all the advice. It really has helped.

HI, I hope that things have been improving. It has been some time since I’ve been on here, so I’m replying to an earlier question from yourself. I am a Social Worker in a Learning Disability Team, but work closely with the Community Learning Disability Nurses. Your question was about the nurses just having an advisory role. Their role is advisory, as the support staff would ultimately work to their employers, the Registered Manager of the home. However, when we have occasions, where home staff are not following the guidance of any health specialist, we have reminded the provider in writing, referred it to safeguarding (Care Quality Commission are notified at this stage) and eventually in one case, rehomed the individuals living there. The starting point is always ensuring the guidance is in writing and part of the Plan (or the care plan can refer the provider to the specialist instructions). When Community LD Nurse and Social Worker review the placement (annually), they should be checking that the staff can lay the hands on this care plan and are aware of the instructions. Are new staff reading this before they work with your brother. I hope your email to the Senior Social Worker got you an allocated Community LD nurse, he certainly sounded like he needed one, it may not be that he would have one on-going but just to get things sorted with the provider and then to attend reviews annually, to check that they remain on track. If there are any on-going issues, you may also want to speak to the nurses who work in the Commissioning Team, they need to be aware of any on-going issues in a service that they are paying good money for.


I forgot to add, that the idea of going for deputyship is a really good one - but make sure you get both welfare and finance, as so many people only get financial.