Who am I?

I am Devansh’s mum. Devansh is a 10 year old boy with complex needs. We desperately need additional support to help us to improve Devansh’s quality of life. We have been challenging the very limited support provided by our Council for some time. We are seeking funding to help us to investigate potential judicial review proceedings against the Council’s refusal to increase the support provided.”

Devansh is a happy and sociable 10 year old boy who has profound physical and learning disabilities, which affect all areas of his life. These include dravet syndrome, sudden death syndrome, and global developmental delay. Devansh needs support 24 hours a day, including by 2 people at certain times, to help him to live a happy and comfortable life.

We need your support to help us to pay for legal fees to challenge the level of support that is currently provided by our local Council.

Devansh's story

Devansh is a happy and sociable child. He loves to undertake various different activities and he likes to be entertained and stimulated. Devansh needs support 24 hours a day to keep him safe, to ensure he has enough food (through his gastrostomy tube), to administer his frequent medication and to complete his personal care in order to maintain his dignity. He often needs support from two people at once, for example, to transfer him from his chair to the floor and from one room to another. Devansh has sudden death syndrome and experiences frequent seizures, including silent seizures. These can cause him to vomit and it is therefore important to monitor Devansh constantly to ensure that his airway is clear. This includes monitoring Devansh throughout the night.

Devansh lives at home with me, his mother, and his father. His father works full-time and I work part-time in order to provide the family income. I have health issues of my own, including carpel tunnel syndrome, IBS, active crohn’s disease and stomach ulcers. These conditions are all exacerbated by stress. Between us, Devansh’s father and I must ensure that one of us is alert and able to respond to any seizures that Devansh experiences during the night, as well as to tend to his gastrostomy feed. One of us sleeps in Devansh’s room with him and the other sleeps in a different room. This is exhausting for both of us, and neither of us has had a full night’s sleep for a very long time.

Why are we taking legal action?

We have desperately sought help from our local Council to provide carers to supplement the care we are giving to Devansh and to provide some much needed respite. We have had a constant battle with our Council, dating back to 2016. 

In 2019 the Council agreed to increase the level of support that Devansh received, so that he would have the support of two external carers in the mornings and evenings 7 days a week, support to help him to engage in social activities in the community, and an additional 20 hours’ per month to be used flexibly for overnight respite. We were initially very happy with this level of support. Unfortunately the care package was never implemented in its entirety and the hourly rate for overnight support was so low that no carer would agree to work at that rate.

Through our solicitors, we sent a formal letter before claim to the Council and asked it to reassess Devansh’s needs. Despite never having fully implemented that care package, the Council has since reduced it further. It has also confirmed that carers cannot assist Devansh with tasks relating to his feeding, medication, suctioning or personal care at home, including changing pads, hoisting, showering or undressing. Devansh requires some of these tasks so frequently, that it is unsafe to leave him with carers who are not permitted to complete them. This really defeats the object of his support package and makes it unworkable. 

The Council argues that Devansh’s needs are health care needs, but the CCG say that his needs are social care needs. We continue to go around in circles.

I am often left to complete Devansh’s transfers on my own, out of necessity. This is unsafe and we recently had an accident, but I am left with no choice.

We need support to challenge the Council’s latest decision and its general failure to meet Devansh’s needs, which seems to us to be completely irrational.

What are we trying to achieve?

We are fighting to increase the level of support that our son receives. In doing this, we are contributing to the fight for disabled people’s rights to be recognised. Why should any disabled child or person have to suffer because the state is not taking their needs seriously?

Since the lockdown that began in March of this year, my son has experienced a regression in his mental and physical health due to the lack of external support and stimulation. He has stopped making the expressive and happy noises that he used to make. He now simply groans. I feel devastated every time I hear him make these noises. My husband and I are doing everything within our power to support our son, but we are simply unable to do this to the best of our ability 24 hours a day, whilst working, and without additional support.

Every disabled person should have the right to live a life that they choose. A disabled person’s happiness is just as important as a non-disabled person’s.

What is the next step in the case? 

We intend to challenge the Council’s latest decision in respect of Devansh’s care needs. We will be sending a further letter before action to the Council and then seeking advice from a barrister on whether we can issue proceedings at court.”

How much we are raising and why?

We are initially seeking £1,200 to cover the cost of a letter before claim and additional correspondence with the Council. We are then likely to need to increase our target to £2,500 to enable us to seek the advice of a barrister. If it becomes necessary to issue court proceedings, we may need to raise significantly more funds than this. I will update this page as necessary and having sought advice from our solicitor.