New parent disabled child - advice pls

Hi @RandallC welcome to the Community.

The following links might be of interest to you.

and

Take care.

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.

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.