A father on his knees desperately needing help for. My family..... Please. Please help

Michaelwalesxmtm

Hi all. 
We are a family of 4 living in Wales. 
Me, my partner, my 12 yrold daughter and my awesome son who is 5.

My son was born with a rare illness
X type myotubular myopathy. 
He has been in ah hospital for 4 yrs of his life which has been very hard middle of covid ect.  I could go on and on about a lot more things that is happened over the years but I'll cut it to basics. 

We have been home around 17 month. After 5 month our care package which is a full 24/7 package as he is severaly disabled and 24/7 ventilated via trachyostamy. 
Started to fall apart.. We had highlighted everything straight away knowing we where spiralling to a even harder situation if nothing was done. Most of the actual staff that we had at home were amazing but the company was so unorganised and falling us as a family. For 12 month we were basically down to 50% of the actual hours covered. Then being days without. 
Company in January had a meeting with us and the health board ect and basically with immediate effect were leaving us.. Staff started to leave as soon as they found out and now we have been doing days and nights on end. This is 100 hrs plus for My partner. As I am severely ill myself. 
She has days 9n end of no sleep or even a shower. 
They say as we live in Wales there are no option other than sending him to a hospice 3 hour away from wales up near Blackpool. Just fo weekends. ( but staff needed training there. Too as no one is competent)  as they quote to us they can't make carers....... 
We have highlighted pulse and th9rnbery and few 9ther and they say they can acomudate( hard to think there 8s no one all over uk that. Can't help)
even though they have quoted money is no object... Have gone all the way up to chief executive of the health board. 
Our. Local mp, doctors ect ect ect no help..... 
We are running really thin and as we are a private family. Has taken a lot for. Me. To do this and find any answers...... If anyone can help in anyway please get in contact with myself ASAP.   We are desperate to be home as we know he has a life limiting condition and time isn't really on our side. 
TODAY.
NOW.
THIS MOMENT IN TIME
 IS IMPORTANT TO US AND VERY FRAGILE BUT PRECIOUS,
WE ARE NOT ASKING FOR ALOT. JUST BEING ABBLE TO GET THE SUPPORT THAT WE ARE ENTITLED TO SO THAT WE CAN BE HOME AS A FAMILY MAKING MEMORIES..... 
X

SueHeath

Morning welcome to the group.
I am sorry but i do not have the answers your looking for but i didn't want to you to think you were being ignored.

Hopefully the group will start waking up soon and your post will get noticed.
Some of us pop in and out of the site during the day.

I do hope someone will be able to advise you.

JenF

My heart goes out to you, this is incredibly tough. For myself I have always found that denial of help you are supposed to be entitled to (and therefore everyone who hasn't been in the system thinks you actually get), is the most damaging thing. It has a bad impact on you mentally.
Your dedication to your son and your family are impressive.
I think you need someone else on your side, to do the campaigning for you. Have you spoken to carers' organisations?
Don't forget that the Samaritans are on the phone 24/7, and not just for the suicidal. If you have nowhere else to turn, they will listen. It helped me when we were at our lowest ebb.
Praying for you...God bless you all!

Ross_Alumni

Hello @Michaelwalesxmtm

Welcome to the community, and thank you for speaking so honestly about what you have been through.

It seems as though it's been really hard for you all recently, but it's evident that you are a very loving and close family, which in situations like this counts for so much.

How are you all coping at this moment in time?

This isn't an area I have vast amounts of knowledge of, but have you been in touch with your local authority to request a new needs assessment that could take into account the needs that everybody in your household has? Additionally, have you considered contacting your and your son's GP/ healthcare team to request a supporting letter that explains why you need the support in place? I also wonder if it might be worth making a complaint to the Wales Care Inspectorate 

Some other avenues of support that you could access include:

• Scope's helpline, the details for which can be found here
• Citizens Advice
• Getting an advocate, see details here on the NHS

I hope that other members will have suggestions for you also. This is a very supportive and welcoming place so you are certainly amongst friends.

Sandy_123

Hi @Michaelwalesxmtm welcome, I'm sorry to read about your situation with care for your son. I've put some links below that you may find useful, I hope you get some help soon.

https://www.carechoices.co.uk/accessing-care-services-in-wales/

 https://111.wales.nhs.uk/localservices/socialservicefaq

https://sbuhb.nhs.wales/urgent-care-out-of-hours/need-urgent-care/

Richard_Scope

Hi @Michaelwalesxmtm, It sounds like you are dealing with such a lot as a family. On top of the advice given by my colleague, @Ross_Scope and others, I would like to direct you to, Contact for Families, Our Family Our Needs and the Myotubular Trust. I am sure that one or all of these organisations will be able to guide and support you. Stay strong you are doing a fantastic job.