#SEND30DayChallenge – Day 6 – A Letter to the PM

 

Dear Prime Minister,

I am writing to you regarding my complete despair from the frontline of the cruel continued cuts you keep enforcing. I fully appreciate you will tell me all  “Cuts do need to be made” and “Cuts are happening across the board”  But these endless cuts seem to viciously attacking the most vulnerable in society and their families.

I am a mother of four and also an Unpaid Carer to my beautiful four-year old son who has a severe disability and complex medical needs. I am an unpaid and under valued member of society. Your persistent execution of cuts to the many services we need reflects this. Myself, My family and many other families in similar circumstances are being forced towards crisis point.

73% of Carers said they feel that their contribution is not understood or valued by the Government

Unpaid Carers save our “Government” over £56 billion a year, we earn way less than the minimum wage, being only entitled to just £62.70 per week Carer’s Allowance for a minimum of 35 hours work – the equivalent of £1.79 per hour.  If us Carers only had to ‘work’ 35 hours a week?

A spokesman for the Department of Health said: “We are committed to improving social care, which is why we will consult later this year and put it on a stable footing for the future.”

But the above can not be further from the truth. Consultation later in the year will be too late….

On Friday 16th June, Myself and many other families across Hertfordshire received the devastating news that the Herts Valleys Clinical Commissioning Group would be stopping their £600,000 a year payment to support Nascot Lawn Children’s Respite Service. This is because YOU and Your Government are forcing them to make funding cuts. Nascot Lawn will therefore close on 31st October 2017. Herts Valley CCG did not consult with parents, staff, children, the children’s medical team, or anyone involved in the care of these complex children. They have said it is the responsibility of Hertfordshire County Council to fund Nascot Lawn. Hertfordshire County Council are refusing to fund Nascot Lawn (even though the have millions of pounds in the bank for ‘unforeseen circumstances’)

So what is Nascot Lawn and why is it so important to save?                                             Nascot Lawn Childrens Respite Services provide regular overnight respite and care for children and young adults with severe learning and physical disabilities with additional complex medical needs. A day care service for children under 5 is also provided.

Nascot Lawn allows Parents and Carers to take a much-needed break, Confident in the knowledge that their child is receiving the highest standard of care by familiar staff. The staff are made up of an experienced team of qualified Learning Disability and Sick Children Nurses and trained Health Care Support Workers. The staff strive to meet all children’s and young adults emotional and physical care needs along provided them with activities that they enjoy.  Many of the Parents and Carers see the staff as an extension of their families. Nascot Lawn is described as ‘Home from Home’. It deeply saddens us that the well-loved Staff face losing their jobs also.

Hertfordshire County Council want to re assess the needs of the 77 children that currently have Nascot Lawn named in their care packages, before the end of July.
Even though they have all already been assessed in order to receive their allocated days/nights at Nascot Lawn. Hertfordshire County Council will send members of their 0-25 SEND team to assess us – people who have no medical training, and probably very little medical knowledge. Hertfordshire County Council will not be able to offer us overnight/weekend/holiday respite as the 3 other children’s respite centres in Hertfordshire are NOT equipped to take children with a medical need. Therefore the most needy, vulnerable, medically complex children will go without. Our families – who are already struggling and teetering on the edge of not being able to cope will not be receiving the vital help the need in order to carry on. Herts Valley CCG and Hertfordshire County Council are having a bitter dispute. And our children – the most vulnerable and needy in our community are caught in the middle.

Looking after a loved one can be enormously rewarding, But it can also be both utterly physically and mentally exhausting.  Without vital breaks provided by Nascot Lawn Respite Services, Carers can often reach breaking point where they can no longer continue and their own physical and mental health deteriorates as a result.

On the NHS Nascot Lawn website itself they quote

“ This care enables families to continue to look after children with very complex needs in their own home”Research by Carers UK which surveyed seven thousand Carers nationwide found

What is more vital than that?

Research by Carers UK which surveyed seven thousand Carers nationwide found the following

  • One in four unpaid Carers has not had a day off in five years.

  • 40 per cent of unpaid Carers have not had a break in over a year.

  • 69% of Carers said they find it difficult to get a good night’s sleep.

  • Many Carers are being pushed into mental and physical ill-health themselves as a result.

  • 46% of carers reported suffering from depression because of their caring role.

  •  1.4 million people provide over 50 hours of unpaid care per week.

  • Some 6.5 million people in the UK provide unpaid care by looking after an ill, older or disabled family member, friend or partner

Heléna Herklots, chief executive of Carers UK, urged the Government to improve support for carers, warning:

“Without access to breaks, carers can quickly reach breaking point….. Carers are struggling to get a break because appropriate support for their loved ones isn’t available or services they rely on are being cut or charged for.”

So us devastated Parents and Carers are fighting to save Nascot Lawn. We are all well aware there is no other facility else like it in Hertfordshire so this is our only choice.  We amongst many other plans of action have launched a petition to save the centre. This has been widely supported and has been signed by over nearly 14,000 people – This will be presented at a Hertfordshire County Council meeting on July 18th.

Find our petition below

https://www.change.org/p/kathryn-mason-chief-executive-officer-nhs-herts-valleys-ccg-chair-nicolas-small-save-nhs-nascot-lawn-children-s-respite-services?recruiter=224336991&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition

Watford Borough Council is now officially opposed to the controversial closure of NHS Nascot Lawn following a Council meeting on the 11th July 2017 and was pleased that the motion was supported unanimously

Watford Constituency Liberal Democrats Website says

Our local CCG is facing up to £45 million worth of budget cuts, however, before the election the Conservatives pledged an additional £8 billion in real terms over the course of the next parliament for the NHS.

Yet just a week after the election result was confirmed, over 60 families received letters telling them that a health care service that they truly depend on, delivered by the NHS in Hertfordshire, would close on the 31st October, leaving them with little or no alternative provision.

http://www.watfordlibdems.org/support_savenascotlawn

At the same meeting Labour Councillor Asif Khan called upon the MP for Watford and fellow 11 Hertfordshire MPs to ask the Department of Health, The Chancellor and you yourself to find the money to save Nascot.

http://www.watfordlabour.org.uk/save-nascot-lawn.html

We are hoping the MPs step up and make you see these cruel cuts need to stop. If not then maybe I may make you see how deeply these cuts are hurting families like mine.

Our children need Nascot Lawn to stay open. Despite what Hertfordshire County Council are saying, they have not been in touch to reassure If they listened to us parents they would understand why. Please try putting yourself in our shoes, providing specialist medical care around the clock with no break – you wouldn’t expect your nurses to do this so how can you expect us to.

It is time these cruel cuts came to an end and you supported the vulnerable and those who give everything to support those they love and care for in an increasingly difficult climate. Carers matter. But more importantly our children matter.

Below is a link to our Facebook page where it is plan to see the volume and devastating outcome of many families who need this service. Underneath that I have added my favourite quotes from the page

https://www.facebook.com/savenhsnascotlawnchildrensrespiteservices/#

Our Children cannot communicate or express how they feel,  Our Children who have no understanding of this awful situation. Us Parents who are already tired and on their knees because they care for their children 24 hours a day 7 days a week. Parents who battle daily for the children’s needs. Parents who don’t even have time for their other children and partners.

We are an army and we have been underestimated.

Special needs parents know how to fight! And they fight until the bitter end for their children. This isn’t just a job for us, this is our lives and our children’s lives we are fighting for. We can’t go home and forget, it’s not an option.

Shame on you Herts CCG, Shame ON you Herts County Council

 

And Shame on you and your Government.

 

Yours Respectfully

Sheri

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