Creating a new NHS England: Health Education England, NHS Digital and NHS England have merged. Learn more.
It’s time for something different for families like ours
Gail Maund gives a mother’s view on Integrated Personal Commissioning and why it can change the life of her disabled daughter and of her family:
As a mother of a disabled child, it’s really exciting to hear that my CCG in Hampshire is involved with the new Integrated Personal Commissioning (IPC) programme and is committed to being able to offer something different to families like ours.
Like most people who don’t work in the NHS, I’m not familiar with the detail of what this all means in terms of how the finance works or where the money comes from. My understanding is that one of the aims of the IPC programme is to give people with long term conditions and disabilities more power to direct how the funding for their care is spent.
If it makes it easier for our family to have more control over Ellie’s care, then this is music to my ears
Ellie is eight years old and has spinal muscular atrophy (SMA), she falls between type 1 and type 2. She is a bright happy girl who loves playing on her iPad.
Following months of tests and hospital consultations she was diagnosed at the age of 16 months.
She had been generally well until our first admission to PICU (Paediatric Intensive Care Unit) in December 2008 where she needed to be sedated and intubated as she had developed pneumonia. Ellie recovered well from this and planned surgery followed in February 2009 to insert a gastrostomy to help with feeding.
Unfortunately, Ellie was admitted to PICU again in March 2009 and intubated again due to pneumonia. After many failed attempts to extubate, the decision was made to have a tracheostomy in April 2009. Our life had changed completely but it was so nice to see Ellie’s face without a tube stuck to it. She has required 24 hour ventilation ever since.
We brought Ellie home in September 2009 and have never looked back, although we had no idea what lay ahead! It has been a huge learning curve but we feel that we have learnt how to care for Ellie in the right way.
Gaining confidence to care for Ellie at home and be trained properly to meet her needs and use all the equipment correctly was daunting, but we were eager to be as competent as we could as this meant we could get Ellie home with us and her brother as soon as possible.
The challenge came when waiting for a package of care to be set up. Months passed while we waited for a care agency to be contracted and then for them to adequately train staff so they were able to look after Ellie.
We currently have a continuing care package which supports us seven nights a week and term time for school. Ellie attends mainstream school and is supported by someone from health, who is from the NHS care package, and also a teaching assistant in school, who is supported by education.
Having a ‘normal’ family life is as important to us as it is to anyone else. One of our children lives with a severe disability and that’s challenging in itself, but being expected to cope with a lack of privacy, freedom and choice just makes that harder.
We feel that the current package is not working for us and has left us with lack of care at times. We have tried a few agencies and that just hasn’t worked for us. Having a stream of strangers through our home is difficult for us all to cope with, and it’s not always possible to get competent staff, leaving gaps in the rota.
All children are different and even if they have the same condition, or clinical needs, a ‘one carer fits all’ scenario is no good. We need people we trust to care for our beloved Ellie, not ‘carers trained to manage spinal muscular astrophy’. It’s important that those carers understand her personality, her preferences and can fit into our family routines.
We’re really keen to have a personal health budget as it would give us greater control over the package. It would allow us to interview, recruit and manage a team of committed carers who we feel would be a good fit for our family. It sounds like hard work to take all that on, but we want to give it a try as it has to be better than what we have now.
I can’t have other people choosing who looks after my daughter, and telling me how things will work. Ellie is always going to need this high level of care, so getting this right just couldn’t be more important.
While I won’t pretend to understand all the work that goes on behind the scenes to make the NHS run smoothly, if there’s a different way to do things that allows us to lead our lives as we choose, while Ellie gets the best possible care, then that’s great news for us.
What’s even more positive is that we won’t be doing it alone, and that our CCG has signed up to giving more flexibility and control to disabled children. The future feels brighter.
- Follow Gail’s journey to get a personal health budget for her daughter Ellie on the peoplehub website.
Peoplehub are a national organisation bringing together people who have direct experience of managing a personal health budget.
Does Ellie get the new drug oleximine as I understand it prevents progression of sma
Hi Gail, it was great to meet you the other day at the start of the work towards IPC. Here’s to working together on this really challenging and exciting project. I think there are lots of families who would agree with what you say in your blog about caring for Ellie, lets make it happen!!