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Caring for a child with complex needs

Jill, a parent carer from Camden and a member of the team at Camden Carers, shares part of her caring story with us. Jill's daughter Rowan has needed constant care since her birth in 1989. Here, Jill shares some of her most challenging and inspirational moments through her caring journey, offering some sound advice to others following a similar path.

I am Jill and I have a long experience of caring for my youngest daughter, Rowan, whose traumatic birth in 1989 left her with profound and multiple disabilities. For over 20 years I was her main carer, until she went into supported living, where she is happy and well-looked after.

She has just turned 32.

Photo of parent carer cuddling her adult daughter who has complex needs
Jill with her daughter Rowan

The challenges of accessing much needed support

From the early days of Rowan’s life it was a challenge to get the appropriate services and support that we needed. Rowan was my third child and they were all under five – it's no wonder I was exhausted.

We lived on the 4th floor of a block of flats in Clerkenwell Road with no lift! When needing practical help and support, I was offered a peripatetic social worker, who wasn’t allowed to do anything practical, but instead wanted me to "sit and discuss family dynamics" with her.

I felt myself at the beginning of a downward spiral and for many years my reality was one of survival.

The impact of trauma

It's true to say that most caring situations come out of a place of trauma – a life-changing accident or devastating diagnosis – and that as carers we carry the aftermath of that trauma, possibly for many years.

I haven’t seen recognition of this and yet it seems vital when thinking about supporting carers.

I remember a particularly distressing meeting with two social workers, where no help was offered and I was accused of having “anger issues”. After leaving their offices I wandered around the streets of Holborn in a daze.

I was holding on by a thread and somehow pulled myself back from a very dark place. To this day I don’t know what prevented me from losing it completely.

Supporting parents in a similar situation

As the years went by, I continued the battle for the support we needed as a family. As I faced more times of having to dig deeper and reassert myself, I realised that I had the language and skills needed to do just that.

I also realised that not everyone in my situation had those abilities and were therefore unlikely to be able to fight for the support they sorely needed.

"A growing part of me felt that I was on a mission to improve services, not just for my family, but for others in a similar situation."

An opportunity came when I joined a group of fellow parent-carers of disabled children. We gave each other support and strength enough to start campaigning for better services.

One campaign led to the dedicated Disabled Children's Team in Camden. Previously there were generic children’s services whose knowledge and experience were lacking – our first family social worker said that she expected to learn more from me than I her!

The standing commission on carers

In 2007, when Rowan was 18, I was asked by Carers UK to host a visit by Ivan Lewis, then Social Care Minister, and Gordon Brown, just prior to him becoming Prime Minister.

It was a great visit. Gordon Brown was well informed, relaxed and engaged, especially with my daughter. Her sister commented as he left that “Rowan dribbled on Gordon Brown!”

Not long after this meeting, when Gordon Brown became Prime Minister, he set up the Standing Commission on Carers and I was one of the first people to be invited to sit on the Commission.

We were tasked with drawing up a 10-year carers strategy. It was an interesting time for many reasons, not the least of which was that I often felt like the voice of many carers who hadn’t been heard.

I still struggled to be heard by all the “great and good” on the Commission – some were truly lovely, others completely out of touch. I stood my ground!

Photo of a young lady with complex needs, eating her dinner, supported by her sister
Rowan with her sister Camilla

Thinking about the future

During her teenage years, my daughter was at her specialist school and I began to think about my future. My two older children were making their way in the world.

At 19, Rowan went to residential college for three years; she came home every six weeks for breaks and holidays. I came to the decision that when my daughter finished college, I would no longer consider myself to be her carer. I informed Social Services, saying we would need to explore options.

Some weeks after Rowan went to college, I was sitting at home one evening when it suddenly dawned on me that I didn’t have to be there! I could simply go out without having to arrange someone to look after Rowan. This realisation hit me as another way I had been impacted by my caring role.

At this time, after 20-years away from employment, I began working with Camden Carers. I was already a trained adult teacher and had designed a course for carers called “Is there any way out of here?” – reflecting how I was feeling at the time!

I renamed it 'It’s all about me for a change,' which felt more positive. The course supports carers to refocus on themselves, and make plans to do something for themselves, alongside their caring role.

I am astonished at how many carers have made significant changes after doing the course, rediscovered lost skills and dreams and made new friendships too.

At Camden Carers I have been designing, developing and delivering carer training for nearly 14 years. It is significant that by offering carer-specific activities and training, (often when carers have lost confidence in joining mainstream courses), we act as a “bridge” from the carer-specific back to the community.

I have seen this many times: one carer felt so confident in signing for courses that she signed up for six! Others with shared interests have accessed community courses together. Some have even gone on holiday together.

When social services let you down

Back to my story.

Three years went by and no residential support had been put in place by Social Services, despite my regular communications to them about the urgency of arranging alternative care for when my daughter finished college.

At the end of her three years in college, I was expected to pick up where I left off – effectively imprisoning me in my home and jeopardising my new-found employment.

I remember going on holiday with my sister for a few days and feeling at a loss when thinking about the situation. Returning from holiday, I went to my GP who signed me off work for two months due to stress.

I wrote to the Director of Camden Social Services, who responded by saying I had grounds for serious complaint. The complaint process led to a forensic investigation into what had happened, which found so many things, including at least one serious safeguarding issue.

The process took a long time. Eight out of nine areas of serious complaint were upheld and one partially upheld. I claimed compensation for all my time and the failures, and this was awarded.

I felt vindicated and accepted the compensation payment but cannot underestimate the impact this had on me and my family.

In November 2012, just short of her 24th birthday, Rowan moved into supported living.

"I have an enduring passion for carers living well and believe it to be essential for everyone’s well-being."

I am committed to informing carers of their rights and how the law supports them. I’ve seen too many carers manipulated into doing more than they are willing and able to do, undermining their well-being and the subsequent impact on them and their lives.

As carers, we are more than “unsung heroes” as people love to call us – we are real people wanting to live a good life, whilst being able to care for someone close to us in the best way we can. I don’t believe that is too much to ask.

How to raise a concern

While it is hoped that support needs can always be anticipated, listened to and met, it is unfortunately not uncommon for parent carers to find themselves appealing decisions and finding themselves at tribunals. Here are our top tips on how to best handle those situations:

  1. Document all evidence in writing and by date. Use email or recorded delivery post. Take photos and videos when appropriate.

  2. Know your rights and don't be afraid to draw attention to them. Our guide (to dignity in care) leads you through some of the legal Acts that protect us. Including the Equalities Act and Human Rights Act.

  3. Charities such as IPSEA can offer great legal advice with regards to Education and Health Care Plans

  4. Condition specific charities, such as Mencap or the Down Syndrome Association, can offer legal advice and in some instance, access to legal representation.

  5. Join a supportive community of carers through your local carers centre and/or through an online group, such as our Mobilise community. Other carers are a great source of advice and empathy.

About the author

As well as being a parent carer, Jill Pay is an Independent Trainer-Facilitator and Life Coach, and Breaks & Activities Service Manager at Camden Carers.

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