a mothers love is not enough

The_Old_Bag

Did anyone see this BBC1 programme on Tuesday night ?

I tuned on by chance.
I was highly skeptical - thinking it would just be someone with a "Diana" connection trying to get in the public eye again.....

But although it was a slow start....I was completely fixated.

This should be compulsory viewing for all social workers and healthcare professionals who deal with families where there is a disabled person.

I was often close to tears, I just wish my work colleagues had seen it and maybe given them pause for thought.

Too often when I leave work early I know I am considered to be not fully committed to work, part-time, having an easy life, just playing at a career etc.
If they knew/understood that when a carer leaves their job to collect their disabled child THAT is when the real work starts.

For a change, not a rant but a bouquet of flowers.:T
Well done BBC on a very thought provoking programme, and top marks to Rosa.
The programme came over perfectly (for me) not too professional, not 'choreographed' for maximum effect, with faults and flaws just like the disabled young people themselves who we love so much, but who drive us to distraction.

I am putting the link to the BBC forum about the programme.
I am clearly not the only one reduced to tears to see my own situation displayed on my own TV screen for all the world to see..... if they are not too busy watching some manufactured "reality" show !!.

http://www.bbc.co.uk/ouch/messageboards/F8146589?thread=7069979

Broken_hearted

Agree ALL social workers should be made to watch and have a heckof a lot more training in dealing with carers and disabled people. The service is shocking.

spuds_2

I didn't see it, but I'll look out for it next time. Probably cry all the way though though, it sounds very moving.

dmg24

Broken_hearted wrote: »

Agree ALL social workers should be made to watch and have a heckof a lot more training in dealing with carers and disabled people. The service is shocking.

Not all social workers are shocking! I am sorry if you have had a poor experience, but it is unfair to tar everybody with the same brush. :rolleyes:

Julieg

dmg24 wrote: »

Not all social workers are shocking! I am sorry if you have had a poor experience, but it is unfair to tar everybody with the same brush. :rolleyes:

He/she said the service was shocking not social workers.

The_Old_Bag

I don't want to get into criticisng Social Workers.
I know some personally whose own health has suffered due to the strains they are under.
But just like healthcare professionals, and even benefits staff for that matter I think they are working an impossible and unsympathetic system.

David Cameron was on the programme talking about his disabled son Ivan who died earlier this year. I cannot remember his exact words, but it was certainly along the lines of carers having to spend too much time fighting for things which would benefit the disabled person, and those that care for them - instead of being able to focus their time and effort on their disabled child.

Just my personal opinion, but if I went to the doctor and received a diagnisis of Cancer or Diabetis, I would think he/she would then automatically start telling me what treatment was available, how I could help myself, I would be referred to the hospital to see a specialist etc.
Have your child receive a diagnosis of Autism for example.....
NOTHING.
In fact most parents/carers spend years fighting the system just to get the diagnosis.
One couple in the programme had a son aged 17 or 18 I think it was, who was Aspergers.
The system didn't recognosise him as a child, nor as an adult,
Therefore he appeared to be no departments responsibilty.
The viewer saw the young man displaying some very worrying behaviour, he was hitting himself, was constantly swearing .....yet clearly distressed at his own behaviour and lack of self control.
He had struck his father I think and tried to throttle his mother...he kept mumbling he didn't want to talk like that.
It is upsetting just to remember the scene. His poor parents were completely at their wits end.
Where was the help.....no where, because at his age he was no one elses responsibility but his parents.
They ended up paying thousands of pounds of their own money for Cognitive treatment, and on Rosas next visit you could clearly see a marked improvement, although he clearly still had major issues.

One poor woman on the programme had a son who was severely disabled and had a mental age I think of less than 2 .He was doubly incontinent I think and she was having an on-going battle with her local PCT because they were rationing her with how many nappies she was allowed a day !!
She had to keep records of how much liquid and food he took in, and was expected to syringe up the urine in his nappy and record how much he excreted out. She was eventually allowed one extra nappy a day !!
In the final credits Rosa spoke a brief update on some of the families covered, and said this mother had eventually managed to get another extra nappy a day.

I mean, I ask you.
Does any of the powers that be in health, social work or the benefits dept think any parent is "milking the system" and bleeding the pot dry ( pardon the pun) over expecting nappies for a disabled person.

That is the level of petty minded bureaucracy that we face every single day.
I have cared for my disabled young person for over 13years from diagnosis.....and never had so much as a single day of respite.
I have phoned up social services to ask what help the disabled person and I can receive....and am asked "Well what do you want ?"
I have been told that if I do not ask for exactly the correct thing, using the correct words, I won't get anything.
No one will ever offer me help or suggest what help I am entitled to.....because the staff are not allowed to actually offer that kind of advice or pro-actively help you !!!
My disabled person receives DLA, but no-one ever offered this to us, told us we were entitled etc. It was only because I was supported by some fantastic Menphys staff who asked me if I was already in receipt of DLA that I found out about it.

As it was we missed out on the time we would have been entitled to the money....because they will not back date a claim.
But if you don't not know you are entitled, or even that such financial support if available, how can you apply ?
Back to the social workers, unless I specifically say to them, I want to apply for DLA they will never advise me that there is this benefit available for people like my disabled young person.
Madness
I have recently met a wonderful woman, whose disabled son is in her 30's, it is only recently that she learnt about DLA, applied and now recieves it on his behalf...... but not a penny for all the years she has had to struggle and fund everything herself.

Sorry, rant over.
This really did start out as a bouquet.
I really am not criticising Social workers en-masse. I just think if they watched programmes such as this, it may give them an insight into the life the disabled person and their carers lead, and a little less that they are just another client expecting financial support out of a limit department budget.
I genuinely do not think that disabled young people and their carers live the financial highlife at the expense of the taxpayer.

The_Old_Bag

P.S
The Single mother with the severely disabled son needing nappies.....

Was also a victim of abuse etc in her neighbourhood. She had another son who was 2 years younger than he disabled boy, he had no friends in the area. It showed you him being called names etc by the local 'youths' - because he has a disabled brother !!
The cameras followed as mother and 2 sons walked down the road - the disabled child in a specially adapted push/wheel chair....and you could hear the cat calls in the background.
Disgusting especially after the publicity following that Leicestershire woman and her disabled daughters suicide. She had reported it to the authorities, but the behaviour still continues....inc throwing stones at the house I think
What does she do when she gets indoors and manages to physically manhandle her disabled son into his bed....probably start syringing up urine to keep records for the PCT !!!
What a life. The woman is a saint :Abeing treated like scum.
Rant over now honest

When a Mother's Love is Not Enough

In a frank and moving documentary, successful businesswoman, charity worker and confidante of the late Princess Diana, Rosa Monckton, explores the realities families face when caring for a disabled child.

Against a backdrop of headline-grabbing cases in which desperate mothers, such as Fiona Pilkington, killed themselves and their child because they could no longer face the daily reality of their lives, Rosa, who herself has a child with Down's syndrome, admits that she too has felt a crushing despair.

Since the birth of her daughter Domenica, Rosa has campaigned for the rights of disabled children and their families. After the recent shocking high profile cases in which mothers have killed their disabled children, she sets out to show how easy it is for families to reach the brink of despair. She also discovers how the maze of bureaucracy often prevents families getting the help they need.

The_Old_Bag

P.P S.....sorry, I will go to bed soon, honest.

This is a review of the programme from The Scotsman newspaper:
http://thescotsman.scotsman.com/tv-reviews/TV-Review-When-Loving-Your.5811805.jp

I have also been reading the comments on the points of view pages of the BBC.
Many expressing the similar views as my own, this was a great programme, well overdue.
Most also saying it should be repeated at an earlier time, and social and health workers made to watch it.

If you get a chance, read post 14 on POV by Angelsandhalo.
I don't want to breach any rules (BBC, MSE or newspapers) so I am just providing the links;)
http://www.bbc.co.uk/dna/mbpointsofview/F1951566?thread=7068087&skip=0&show=20

I haven't watched Points of View for years, but I will have to find out when it is on and watch it this/next week