New parent disabled child - advice pls

RandallC

I’m a mum to a one year old girl Elsie

She has an ultra rare neuro condition and spent first 8 months of her life in hospital. We came home 3 months ago, via a hospice as we didn’t think she’d make it, and she’s thriving. She’ll have challenges but she is also developing and we are more hopeful.

We came home with a care package funded by NHS in Sussex region. You can’t leave carer unattended unless someone with PR is present (parental responsibility). I’ve carefully put together a list of family and close friends who can do this as well as a child minder to cover me working 3 days a week. I’m not in a position to give this up. This is all alongside a trained carer to take care of Elsie’s needs until others can learn them better. This will take time. We even have secured a nursery space reliant on Elsie attending with carer for now.

But now the Sussex healthcare provider managed by the ICB is saying people with PR need medical training (despite being with a carer). This is impossible, it creates more obstacles, makes planning any kind of new normal after 8 months in hospital hugely challenging and seems to imply care package relies on me giving up work

This doesn’t feel right

Im at point considering legal advice

Can anyone share own experiences?
or advice thank you 🙏

Bluebell21

Hi @RandallC welcome to the Community.

The following links might be of interest to you.

https://neural.org.uk/blog/2025-england-rare-disease-action-plan-what-does-it-mean-for-people-affected-by-rare-neurological-conditions/

and

https://www.neural.org.uk

Take care.

Rosie_Scope

Hi @RandallC, welcome to the community. It's brilliant that you've managed to get Elsie home, but I'm sorry to hear about all the complications in her ongoing care. That's so frustrating after all you've been through. I will tag our children and family specialist @Mary_Scope as she may have some helpful advice to share after the weekend.

You might also like to chat to Contact: https://contact.org.uk/help-for-families/information-advice-services/our-helpline/

They have an advice helpline if that's useful to you. But I hope some of our members might be able to share some experiences soon too ☺️

Santosha12

Hello @RandallC, a very warm welcome to the community from me too.

I'm so pleased that you've been able to have your little girl home and that Elsie is thriving, that's really wonderful for you and all of your family.

It must be though extremely disappointing to be told, especially after 3 months, that anyone with 'PR' must have medical training, alongside the [funded] carer.

If they have not been clear about what medical training is needed I would advise to contact the Sussex Healthcare Provider ASAP to get them to tell you exactly what 'medical' training is needed.

I am assuming from your post as you have stated that it is one carer that is funded, at any given time, and assume that it is 'around the clock' care (ie 24 hours a day).

As a former nurse there are a few 'pointers' I can give you that would potentally require two trained people to be present at all times, for Elsie's safety; none of these might be applicable to your situation so please ignore if they are not but if she has any of the following support needs:

Tracheostomy care; Suction care; Total Parental Nutrition; support and medication for seizures; indwelling catheter (urinary or suprapubic); stoma care.

Depending on the level of support she needs, there may be a [safety] risk (carer doesn't arrive for her shift for example, or carer on duty becomes incapacitated) so in some instances, like the above, I can understand the need for additional trained people.

I was trained in Tracheostomy care/suctioning, for example, but we had to have more than one trained on each shift.

However, has the correct care package been put in place to start with by the ICB. If Elsie does not have the needs as above the question of exactly what medical training applies for sure - or, are the severity of her needs such they justify two funded carers.

I am sure there are also training companies that will come out to train at your home, including to groups of people - you might need to check will the ICB fund this too, if needed.

Whilst you wait for Mary at Scope to advise, the following charities may be of interest/help to you in the meantime: cerebra.org.uk and SWAN UK - the latter [Syndrome without a Name] also deal with rare conditions too.

I hope the above does not feel overwhelming, they are just my thoughts, and I hope that you're able to get very specific answers next week. With my very warmest wishes to you.

RandallC

thank you so much to all who have replied so far - just finding this community alone has made a difference already!
So Elsie doesn’t actually need two carers. She’s currently peg fed but pushing to go back to oral feeding and she has apneas where she stops breathing and needs oxygen but these are easy enough to manage

I work for myself and up the road! So if anything happens or someone called in sick, I could be home in less than 2 minutes!

One day a week I need to go to London but I can change this if it’s a heavier health care week and on days I go make sure there is an emergency number

it just feels like it’s taken me 6 weeks to put things in place to enable me to do this and because someone new has started at the ICB we are back to square one again

It feels like they are actively trying to make things as hard as possible when I’m trying so hard to do a good job and be on top of so much as well as trying to find more advanced treatment

The new ICB person went through all the log books and queried things like “mum went out for a jog” (these were actually social hours) but it feels like I’m under surveillance when all working so hard

I went through a horrific time last year and I can’t understand this approach, it doesn’t feel supportive.

Thank you for all the recommendations ❤️

RandallC

also I’m not medically trained so my child minder replacing me as PR is no different to having me there now - she’s learnt how to do the pump and the meds in the same way I had to

Bluebell21

You sound to be doing an incredible job with your daughter @RandallC

I think the ICB people sometimes forget parents are not medically trained and learn what is needed to be done so there child can be at home.

I am not medically trained either but had to learn how to do drips for my daughter at home and the first few times when I was on my own without hospital support was quite terrifying. (she did not have a neurological condition).

Do not let the ICB person bully you into feeling guilty for going for a jog.

I really hope you get the support you deserve.

Take care.

Santosha12

https://forum.scope.org.uk/discussion/comment/1125911#Comment_1125911

I'm sorry you have gone through such a horrific time last year @RandallC. It must feel extremely unsettling, to say the least, after everything you've put in place, and your wholehearted love, dedication and commitment, to not feel supported by the new ICB person. When you state it doesn't feel right, and after providing additional information here, something feels 'off'. I think Mary (Scope) could be a very good source for further guidance for you.

As an 'aside' the comment about going through the log books and going for a jog, did make me wonder about the new persons' [ICB] level of experience. It would be a great shame for any ill-judged, or misinformed comments, and feeling of surveillance, to diminish your confidence - I hope it does not; as Elsie's mum, trust your gut/instinct - I'm sure you do!

Finally, thanks for providing more information and I'm so pleased that Elsie's needs do not encompass some that I've referred to earlier, particularly tracheostomy or needing two carers. You'll know there are different types of sleep apnoea (I'm thinking here Obstructive or Central). If your ICB contact is actually referring to 'medical training' in respect of this, for instance, then they need to be specific. Again, Mary could advise how to best approach this.

If Elsie is still under the care of a paediatrician they can also be an invaluable source of support and care-planning for her at home. I was not trained in paediatrics (Adult Nurse only), two things that came to mind were paediatric first aid training and CPR training.

If you need further information on sleep there is 'The Lullaby Trust' (I'm not sure this covers sleep apnoea) and the 'British Lung Foundation', I wrote for the latter, only proofreading but I cannot recall how much relates to infants.

I wish you all the very best and hope that this coming week proves helpful to you and brings you additional strength, and much deserved support. Take good care of yourself too.

Santosha12

It's actually the 'Asthma & Lung UK' charity, @RandallC sorry, I still call it the former name ('British Lung Foundation'') before its' rebranding/merger.

RandallC

thank you! according to ICB rules I’m not allowed to leave the house even to go to the shops or pharmacy let alone a jog without being covered by someone for PR unless I take Elsie

And even now I have someone in place who I pay to allow me to work and get out it’s a problem again - I didn’t take anti depressants all of past year but exercise keeps me sane

Her apnea happens in the day and is why we stayed in hospital for so long but she’s hugely improved and anyone can manage three now with wit oxygen - none of us have had training for this and Zoe (child minder) as well as family can use this easily

When Elsie starts nursery the nursery do not have medical training but as a carer would be with Elsie they in that instance take role of PR and are happy

So this should apply all round as it has been past few weeks until new person started

RandallC

and if they are making it this difficult they should be making it easier to find ways around it, to empower me to work, to keep mental health good so I’m better for Elsie

RandallC

Elsie is my daughter and I as her mum should have the freedom as a sensible person to nominate who she is safe with and what’s the point of the care package if I also need medically trained people? Then I might as well pay a medically trained person full stop and lose the package and if that’s the case how is that fair? Am I only entities to support if I don’t leave the house? We get social hours at the weekend sometimes from a different team where you can leave the house though these are often cancelled last minute but the carers who turn up for these are the same that come during the week so it makes no sense and they agree

So it’s one rule when the hours are care hours and another when social so the reason can’t be because they are worried for Elsie

Santosha12

You're very welcome @RandallC I'm just sorry that I can't advise on the ICB or the 'legalities'. I hope you can navigate this with the least stress and unease as possible, that's hopefully, where the charity's knowledge and expertise will come into its' own and that you get the support and guidance needed. But we're here for you too.

It seems to me to be a tricky (and unexpected) 'fork in the road' at the moment but one that I'm really rooting for you to navigate so that it works well for you and your family.

Do you mind me asking if you felt able to update us once you have answers, it may help us help others - but only if you feel up to that, and able, there is absolutely no pressure on you to do so at all.

Take care, the warmest of good wishes to you.

RandallC

thank you yes I’m sure we can iron out and I’m grateful for this forum and it’s made me realise we aren’t alone and there is power in knowledge

I will update

The ICB may of course also be looking for ways to justify reducing our package as Elsie is doing well so that’s possible but she’ll need a level of care most likely all her life so it’s important we find a way forwards and I too want others to benefit

Bluebell21

Hi @Mary_Scope are you able to add anything to this thread?

Thank you.