Newbie

Hi All ,
I am Arlene ,im a kinship carer of my 18yr old niece,a bit about her ,she has Cerebral palsy,NF1 and other learning difficulties, she communicates through Makaton (which I had to learn fast ),I googled carers help and this forum popped up.i think I was looking for help/advice (I’ve already been down the contacting the social work ,problem is she is transferring to adult services .
She is becoming more and more violent with me being the target (currently nursing a black eye and broken rib).
I think she needs assessed but is too old for camhs,but don’t know where to start ,ive been to the gp today and got “oh dear” no further forward.

Hi & welcome Arlene

Your niece regardless of her age and disabilities should not be hurting you! Your niece must of had a children’s social worker and her case should have been transferred to adult services. There should be a care plan if not one needs to happen swiftly. Contact the local authority adult disabilities team. And ask for an urgent assessment including one for you as her carer. You need strategies and training on how to protect you both.

Hi Arlene,

Welcome to the forum.

Is your niece still in education?

If so the school nurse and SENCO should be able to support you with referrals- make sure they know what is happening.

If she has left education before 19, then the GP needs to refer her to the learning disability/ community nurse team. Him saying oh dear, really isn’t good enough!

Either way the referral needs to be classed as urgent.

How long have you cared for her? It sounds like you have done an amazing job - taking her on and learning Makaton.

Does she need help with personal care? Many teens don’t want this support from family anymore and it can be a real source of tension. Often they are more willing to accept it from care staff. Social care can put this in place. She should be on their radar as she is fostered.

Transition to adult services is often stressful and problematic for families at a time that is stressful enough already.

Melly1

Hi Arlene

Welcome to the Forum, I hope you are finding it interesting so far.

Just wanted to highlight that we are currently running Forum Focus, an opportunity for Forum users to hear more about Carers UK’s work.

Find all the posts here: https://www.carersuk.org/forum/48

Thanks

Aaron

Hi ,sorry I haven’t replied I’ve been dealing with appointments/needs for my own son (he has crohns disease).
My niece is in her final year of school ,she was held back in nursery.
Looking at your replies I think my best next move is the school for referral to some sort of assessment.
I haven’t seen her current social worker in 3 months as we are not in crisis.
If the school can’t help ,I will go back to the gp.
I have Cared for my niece for about two and half years after her gran (age 78) took sepsis.
My niece is double incontinent ,cannot dress herself etc etc etc.
She says yes for no and no for yes which probably confuses things more,then violent outbursts to 3 seconds later she loves you then back to violence

Arlene

Hi Arlene, welcome to the forum.
Can I ask why you are caring for your niece, not her parents?
Is it a legally arranged situation?

You need to contact Social Services and get an urgent Needs Assessment for her, and a Carers Assessment for you.

My son was brain damaged at birth, unable to read, write or do any maths, but fortunately, he isn’t aggressive.
My main concern is that he is happy and settled before I die. He has his own flat, with carer support now, as I’ve had lots of health issues.
Your niece is going to need lifelong care, from what you describe she might be entitled to NHS Continuing Healthcare.

.

Hi,bowlingbun,
My niece was removed by social services when she was 6 from her parents due to neglect and went to live with her grandmother. I was always on the paperwork as an unofficial guardian/Carer.
She still sees her mum for 1 day a fortnight (dad passed away in Jan)
I am now her legal guardian in all senses.
Also this is my cousins daughter (just easier to say niece)
I have contacted the school this morning to see if they could refer her ,they don’t do it ,pastoral care told me to contact the gp,so here’s hoping I get somewhere

Arlene

Hi Arlene,
That’s not true re what pastoral care told you. Is there a school nurse on site or who visits the school?
Schools most certainly can refer children to mental health services - they just need parental permission to do so.
However, since school are being unhelpful it’s worth contacting the GP again.

This info maybe of help Getting Help For My Child's Mental Health | YoungMinds

Also refer her to the social care learning disability team.

Melly1

Contact Social Services yourself.
In some areas there is one joint team from Health and Social Services, in others, there is a separate Health LD Team.
Everyone should be helping you, not passing the buck!

In my area they have a special Health LD team to deal with people who are being aggressive,
I just can’t remember what it is called I’m afraid, as not relevant to my own situation.

Hi all,
I have an update, my niece now has an adult social.worker who has referred her for a psychological assessment which I appreciate there is a long waiting list.
She now can access the adult services,the sw was actually really helpful for things to do in the mean time.
I finally feel I have got the right person to help me.
Things aren’t perfect they think she has attachment issues concerning me.
I did say no matter what I won’t give up however tough it becomes.
I’m determined to keep advocating for her and myself
She might not be my child but I love her like my own.

Arlene

Arlene, your devotion is admirable, but please remember that you need to have a life too.
Also, residential care is not a punishment.
It’s OK to ask for time off from caring - so it’s important for your niece to gradually get used to having others care for her too.