How a personal health budget helped Val and Beth

Val McGurk lives in Sefton and cares for her daughter Beth who has very complex care needs. Beth has a condition called Rett syndrome, a rare genetic disorder that affects brain development, resulting in severe mental and physical disability.

Why apply for a personal health budget?

Beth’s care needs require a lot of continuity to enable caregivers to become familiar with Beth’s needs, something which was lacking in the support that they were previously receiving. Val had heard about PHBs from Beth’s complex needs nurse and knew of other parents in Sefton who were benefiting from this type of support. However, when she had tried to get an assessment previously she was told that Beth would be ineligible.

Val contacted Rett UK, a charity which has supported the family since Beth was diagnosed with Rett Syndrome. Rett UK provided invaluable expertise and experience to help Val ask Beth’s NHS healthcare team for a health assessment to show that Beth’s needs weren’t being met. Through a process of multidisciplinary meetings they determined that Beth qualified for Continuing Healthcare (CHC) funding, which meant that they were eligible to access a PHB.

After accessing a PHB, Val opted for a direct payment which meant that as Beth’s representative, she received the money directly and then employed a care agency to provide the care that was needed.

Getting the right support for you

Beth’s PHB was set up to help provide the care needed to meet her complex needs, however Val found that she was still spending a lot of time juggling caregiving with managing all of the admin and finances for Beth’s care. She found that employing a large national care agency wasn’t working for them. They weren’t receiving the personalised levels of care that Beth needed or the level of customer support that Val needed as a busy mum and caregiver.

“It takes a long time to learn to understand Beth’s different ways of communicating, and having 30 different care staff over a period of 6 months meant that nobody could build up that relationship with her, so I would still have to facilitate interactions between Beth and the carers.” - Val

Val approached our CCG team to talk about their struggles and was referred to Sefton Carers Centre, an organisation that provides free advice, guidance, and emotional and practical support for unpaid carers. Their team had much more local knowledge and worked with local advocacy service Sefton Advocacy to coordinate the right support for Val and her family, research information and services for her, help to manage her budget and plan for the future.

The teams also helped Val to seamlessly transition to a more efficient way of managing Beth’s PHB, organising a new local care agency to provide continuous care from a small, dedicated team rather than a rotating schedule of care staff. They also took a great deal of admin work and worry off Val’s hands, much to her relief, and have built up a great relationship and trust with both Val and Beth.

How has a PHB helped them?

Having a PHB has enabled Val to get the right care for Beth’s complex needs, with a consistent team of carers spending more time with Beth, learning to understand her methods of communication and providing more personalised care.

“We knew that Beth’s needs weren’t being met through social care, and it was thanks to the help we got from our NHS healthcare teams that we were able to demonstrate that Beth was in need of different support, which we got through accessing a PHB.” - Val

For Val, receiving support with managing their PHB from Sefton Carer’s Centre means that she has more time to care for Beth, look after her own wellbeing, enjoy family life and get a proper night’s sleep for the first time in 20 years.

The process to get to this point felt daunting at first; from initially approaching Beth’s healthcare team, going through the health assessment to qualify for CHC funding and then applying for a PHB, but working to get the right support means that life has now vastly improved life for Val, Beth and their whole family.