Updated: Dec 12, 2020
If you want more choice and control over your child's care then this is for you. Personal Health Budgets are brilliant BUT they do come with a lot of responsibility and I found it quite daunting, I needed an A to Z. So here is mine and I hope it helps you.
Personal Health Budgets do not exist in every country or borough. You will need to check
your local guidance, including information about the different services and how to apply for the funding - my blog 'Is your child entitled to help that you are not getting?' provides all the links needed to find your local Health Board or Clinical Commissioning Group, what care services are on offer, by whom and the terms they use.
Budgets are incredibly confusing and vary between authorities, if you have a choice you will need to make decisions about how to manage your budget:
direct payments, you receive the cash and you manage the service (you become an employer and do payroll - see my A to Z below)
allow the local authority to manage it for you (a direct payment or self directed support)
ask a service provider to manage the budget for you (they will arrange your payroll)
WHAT IS A PERSONAL HEALTH BUDGET A PHB is an amount of money given to children (in our instance) in receipt of continuing care. It can be used to pay for carers, access activities and buy items of equipment that will enable your child to meet specific goals around health and wellbeing. It's planned and agreed between you (or someone who represents you), and your local NHS team.
The guidance makes it clear that any child receiving NHS continuing healthcare has the right to a personal health budget that reflects their individual needs.
MY TOOLKIT FOR SETTING UP A PHB a). REGISTER AS AN EMPLOYER https://www.gov.uk/register-employer b). SET UP A BANK ACCOUNT You can't use your existing current account. c). DOWNLOAD A PAYE SYSTEM (or enrol a company to do it for you): I used the basic and free HMRC PAYE tools which you can download here: https://www.gov.uk/basic-paye-tools d). GET HOME EMPLOYMENT INSURANCE We have used Premier Care Deluxe and Fish - some councils might stipulate who you use e). WRITE A CONTRACT OF EMPLOYMENT List the skills you would like your personal assistant to have. Think about their qualities and list the jobs you would like them to do - be clear from the start and you will have fewer issues. Skills For Care have published a toolkit which is really useful. Contact them for a hardcopy:
call: 0113 245 1716 email: email@example.com f). FIND SUPPORT We have been fortunate to have a great local network, failing this you can advertise or use agencies. We have always had a minimum of 2 employees, one who is fantastic at caring: student nurses, teaching assistants, occupational therapist and psychology students have been my favourite and the other who is great around the house (second pair of hands). Interviewing is a joint effort. Our children are the best judge of character and if they click with the person then it's a done deal. Once we have chosen a support worker I will give them time to read through Spike's care plan and ask any questions. I don't leave a support worker with Spike until they are completely confident with him and his medical needs. And Spike won't allow anyone to touch him until he has built a trusting relationship. This often takes a few weeks, sometimes months and a fair amount of training but it's worth it. g). DBS CHECK YOUR NEW EMPLOYEE Your direct payment advisor may be able to arrange this for you.
h). EMPLOYEE TO FILL IN FORMS: P45 or new employee checklist:
https://www.gov.uk/government/publications/paye-starter-checklist i). REGISTER EMPLOYEE ON PAYE SYSTEM & WITH THE PENSIONS REGULATOR http://www.thepensionsregulator.gov.uk/autoenrolment If your employee earns between £111 - £192 a week it makes them a non eligible job holder -ie they have the option to join. If they chose to join you have to pay a total of 2% of their salary. This can be paid by you, the employer, in full or on a 1% / 1% share with the employee. If they earn over £192 a week its an obligation and it is your duty to set this up. As of 1st Oct 2017 there will be a percentage increase. j). LOOK AFTER YOUR EMPLOYEE Remember their emotional wellbeing - always offer them support, extra training, food, drinks and remember to listen to them. Pay them on time and pay them well - they are looking after your child after all. I like to think i'm a nice employer, I hope i'm a nice employer! We've certainly made lots of friends.
If you have any support you can offer or you would like more help please feel free to email me: firstname.lastname@example.org OTHER USEFUL RESOURCES:
NHS England’s PHB website: http://www.england.nhs.uk/healthbudgets/
Skills for care: http://www.skillsforcare.org.uk/Home.aspx
Making it personal: A Family guide to Personalisation, Personal Budgets and Education, Health and Care Plans http://www.councilfordisabledchildren.org.uk/media/744928/making_it_personal_family_guidance-1.pdf
Personal Assistants Scotland - https://www.panetworkscotland.org.uk
Contact - https://contact.org.uk
Genetic Alliance UK is an alliance of 180 patient organisations, many of which are condition specific UK charities and support groups who exist to support children, families and individuals. They are the experts in understanding their specific conditions and at providing the support that you need. - https://geneticalliance.org.uk/our-members/