It is very difficult at the beginning of this journey to know what type or level of care your child will need. Naturally as a mother you want to provide the care yourself as you always have done. However in many cases your child will need much higher levels of care that are far too demanding to manage on your own particularly if you have other children. As hard as this was for me to accept I had to think about the needs of my other children and what they had been through, I had to ensure that things were as normal for them as possible. Jago’s needs were so high due to the upredictability of his condition that we fought for 24/7 care, it was what he needed and we simply could not provide that.
It is the duty of the CCG (Clinical Commissioning Groups) to provide and fund your child with the care that he needs. Of course funding is tight so they will try to give you the least possible and you will have to fight to get more, but if you have a good case and you fight you will get what you need. We fought very hard and appealed twice, I can honestly say that it was one of the hardest fights of my life. Never before have I had such an invasion of my privacy but I knew if I achieved the end goal for Jago it was all worth it. We didn’t give up and in the end we won! GO FOR IT!
We were given two options of care, the first was that the CCG would provide the Carers and therefore control the budget the second was that we would be given the budget (held by a third party) and we would employ the Carers ourselves. This is referred to as Direct Payments.
Instead of social services providing carers and care facilities, you can ask social services to pay the money to you, so you can buy the support services your child needs. These services might include personal assistance, respite care and support during the day. It has been designed to give disabled people and their families flexibility, choice and control over care.
We chose the second route as we wanted full control over who managed our child’s care and that was and still is at the top of our priority list. However this does mean that you have to find specialist staff (which are limited), manage a team and have some involvement in the payroll, so it is not for everyone.
Finding Carers is an ongoing battle, many Care agencies are not viable as they charge commission rates that are not always supported in a Personal Budget. Eventually we found an agency, called Snap that find suitable staff and only charge a one off commission finders fee. To date this is the only agency of its kind that we are aware of but would love to hear of any other care options.
To access local Care agencies in your area please visit: – NHS Guide to Care & Support – In addition to this we have advertised within our son’s school setting, through word of mouth and through social media.
Training for your carers is of course very important and I would advise that relevant training is up to date. However the most important thing is that your Carer understands and really gets to know your child – this is something that you will need to teach them. It is important that they do things ‘your’ way so that you feel comfortable leaving your child in their hands. This can be a very difficult process as you hand your child over to someone else but it is important for you to have a break, time to yourself or with your other children.
Knowing how to set up protocols and systems for a Care team can be very daunting, record keeping is very important as it allows you to keep track of everything and provides reference points particularly if your child is in discomfort or gets ill. I have included some Organisational sheets in Medication & Record Keeping (link) that will help you to keep track of all daily activity.
There are many training courses that you can send your carers on to ensure that they are up to date with all of their training. Your local CCG should coordinate this with you and provide the relevant information and budget to achieve this, some of the courses include:
- Epilepsy Training
- Manual Handling
- Medication Training
- Emergency First Aid
- Gastrostomy Training
- Health & Safety
- Food & Hygiene Aawareness
My son Jago came home from hospital on a huge number of medications so I needed to create a simple system that would allow us to keep track of all medication, including who prepares it and administers. In addition to this I have found it useful to keep track of his seizure activity, bowel movements and general comfort levels. Below are charts that I have devised to help me to do this.
Medication & Record Keeping
I soon learnt that with the amount of medications that Jago was now on it would be prudent to set up some systems to avoid any mistakes. Below you will find some useful templates that allow you to ensure medications are given on time and to help you keep track of your child’s general comfort and daily activities – this can prove very useful when you are trying to assess the efficacy of medications. In addition it provides information for when you go to medical appointments.