Therefore, it is time to turn our minds to the important roles that volunteers and carers provide to people with cerebral palsy to help them live more fulfilled lives.
The input provided by volunteers and carers depends on how severely affected the person is by cerebral palsy. If someone is mildly affected they may go on and live independently without support, those moderately affected will be able to function with adaptions and a certain level of support from volunteers and carers. However, on the other end of the spectrum is those severely affected who will be reliant on carers for their full lives for all aspects of their daily care.
The role of volunteers
Volunteers are people who give up their own time freely to help support charities and individuals.
Whilst some of the larger national charities supporting those with cerebral palsy have paid employees, most of the local smaller charities are run by volunteers. They have a significant amount of work to do fundraising and raising the profile of their charity to try and fund activities for those with cerebral palsy.
Activities depend upon the charity but usually include, days out, social events and parties, fun activities, coffee mornings, short breaks, emotional support, information services, the list goes on. All these activities are very important to someone with cerebral palsy, regardless of age it is important that they feel included and have social interaction. Without the smaller charities being run by volunteers across the country these would not happen.
As a volunteer for the Hull and District Cerebral Palsy Society I thoroughly enjoy my role volunteering for the society and my duties includes helping organise and attending events, coming up with ideas, helping manage email and social media enquiries and generally trying to help get the name of the charity out there to make sure that anyone in the local area that needs the support from the charity receives it. All of the volunteers for the charity work very hard in their roles and without all the hard work of the volunteers the charity would not still be going and to some people access to the events that the charity organises gives them an important lifeline.
The role of carers
Carers are very important to people with cerebral palsy. For those with severe disabilities, they will rely on carers to provide all aspects of their daily living. Whilst there are a number of private carers and residential homes that can provide this care and respite care, usually the main care is provided by the parents.
When they are a small baby and child the care they need may be similar to what it would be without the child having cerebral palsy, however it is when they grow up and still need the same level of care that the role of parents as carers can become even tougher.
The main goal of parents providing care will be to enable their child to reach their maximum potential and to provide daily support depending on their abilities. The child or adult may have complex life long needs and the family often have to give up work to care for them. Life can be a real struggle emotionally, physically and financially.
Parents often do not give themselves the recognition that they deserve for the job that they do, they tend to simply just ‘get on with it’ but they job they do is a lot harder than they give themselves credit for.
When people see parents/carers out with a person with severe physical and cognitive disabilities it is easy to forget what goes on ‘behind the scenes’ when caring for them. However, a typical day caring for a child or adult with severe cerebral palsy could include the following:
Getting them out of bed, washing and dressing them. They would likely be unable to do any of this themselves and depending on their size hoists may need to be used for transfers, to help wash and dress. If they are incontinent, there would also be changing nappies, possibly bed sheets if they have had accidents. Then there need feeding, they could be on a completely normal diet or require their food pureeing or administering fluids and food through a feeding tube. They would need to have their nappies changed throughout the day, food and drink (as appropriate to their needs) would need to be administered, they would need to be kept busy with activities that stimulated them, communication may be difficult, you may not know what they want or need. Daily physiotherapy exercises may be necessary, they could not be left alone. They would then need changing again, washing, teeth brushing, hair washing, medication administering.
The work of a parent caring for a child with severe cerebral palsy is very challenging, the work does not stop, it is not a 9-5 job, it is a 24/7 7 days a week job. It is carried out on top of the usual household jobs, cooking, washing cleaning etc.
Even going out and about with a severely disabled child is a challenge, you cannot just leave the house, you will need to plan ahead, make sure there are appropriate changing facilities where you are going, make sure their nutrition and medication needs will be met, take all of this with you if necessary. Use a wheelchair, transfer to a vehicle, make sure where you are going is fully accessible, plan ahead to ensure all eventualities are covered. It is not easy.
Many parents as carers simply do not give themselves the credit and recognition that they deserve for providing this care. They think that it is just natural to care for your child and it is done out of love, which it is, however, the physical, emotional and financial strain that this can have on parents and the rest of the family is immeasurable.
Without these dedicated parents, carers and volunteers people suffering with cerebral palsy would not get the help and support that they need.
So, next time you see a charity event advertised, think of the work carried out by volunteers behind the scenes that has been put in to create the event.
Next time you see a parent or carer out and about with a disabled child or adult, think about everything they have to do at home to look after that person, and will continue to do for the rest of their lives.
Staci Liversedge is a volunteer committee member for the Hull and District Cerebral Palsy Society and a specialist cerebral palsy lawyer at Bridge McFarland Solicitors.