Personal Health Budgets Stories

These local stories show personal health budgets in action and the impact and benefits to people’s lives:

Helen and Karl’s story

Charlotte and Tom’s story

Lesley’s Story (Mum of Jack)

Jack lives at home with his parents and twin sister. He is disabled and has multiple healthcare needs. Jack has a great interest in transport and loves to keep active visiting places of interest. He attends college and is a very keen swimmer.

As a child, Jack’s parents worked full-time as well as caring for Jack. Lesley worked during the day and Jack’s father worked at night in order to provide round-the-clock care for Jack. This was a very difficult time for Jack’s family as they were trying to do nearly everything for Jack themselves as well as coping with full-time employment. They felt that Jack’s needs were not being met because he needs to socialise and be active. There was very little time when the family could be together. Jack also liked to receive care from people he is familiar with.

During the transition of care from Children’s to Adult services, Jack was assessed for Continuing Healthcare (CHC) funding and was deemed to have a primary healthcare need. His family were offered a Personal health budget (PHB) and provided with good information and advice, including what they could be used for. The family took this option and were allocated a single point of contact to support them in the development of a support plan.

Initially, the family’s PHB was used to fund an agency to support Jack with his day-to-day personal need but this didn’t work well. The agency was unreliable, with inconsistent staff turning up at different times or not at all.  At a review, it was suggested that the PHB could be used to employ a Personal Assistant (PA).  After discussion and CCG agreement, Lesley became Jack’s PA. Jack now has more stability in his life.

The budget is also be used for activities which Jack loves to do.

Before:

• care package was limited and did not suit Jack as he saw different people
• Jack likes to be very active and enjoys sports but his family lacked the flexibility and equipment to meet his social needs
• Jack’s family felt that his health and social care needs were not being met

After:

• the family has control over their budget and can tailor Jack’s needs to his preferences
• employment of a PA provided Jack with stability and familiarity
• purchase of a mobile hoist gave more freedom and flexibility
• Jack has become more settled since moving away from agency care
• Jack and his family go out regularly and are more united

Lesley says…

“Having a Personal Health Budget has opened up a whole new world for Jack and our family…..it has really enhanced our family life. Managing the budget is very easy but it is very important to have a single point of contact in case you need any advice”

Caroline’s story of an integrated personal budget

Caroline (53) lives with her husband.  She was diagnosed with Muscular Sclerosis whilst living away from Nottinghamshire. She returned home a few years later after becoming increasingly isolated and unhappy with her care provider.

Caroline relies on support with her activities of daily living and needs verbal prompts due to short term memory problems. She also experiences episodes of altered consciousness and requires medication to be administered at these times.

Caroline relies on support with her activities of daily living and needs verbal prompts due to short term memory problems. She also experiences episodes of altered consciousness and requires medication to be administered at these times.

Our experience of care and support was somewhat indifferent prior to a visit from Lewis (PHB Manager) and Andrea (Social Worker) to discuss integrated personal budgets. We always felt that we were never in control of ‘the care package’. To some degree we always felt that organising Caroline’s care was never in our hands and as good as the care agency was we felt that everything was channelled towards them (the agency).

When we embarked on the personal health budget route we felt comfortable from the start. Both Lewis and Andrea gave us plenty of detail and an assortment of information that reassured us. It was not a minefield of do’s, don’ts and “let me check that out”. They both had a very good way of explaining things to us without being complicated.

Health and Social care (in our case) worked very well together – they definitely listened and took on board our wishes for the support plan. We had no worries or major concerns during the planning of this support. Any questions we had were readily answered so it was a worry free transition as far as we were concerned.

Our integrated personal budget plan is still in its infancy but Caroline, for the first time, now feels that she has been listened to and is in control of her care. She is content in the fact that the plan revolves around her needs and enjoys the flexibility that it gives her.

Lucy’s story

Lucy (22) lives with her partner. She has a spinal injury and autonomic dysreflexia. When Lucy was 19 she had meningitis and suffered from Locked-In Syndrome whilst in hospital. She spent 18 months in hospital and specialist rehabilitation. She has a ventilator and needs catheter management.

After a long search, home care was provided by a Healthcare Agency but, despite a long wait for discharge, it was not well planned. The couple felt the process was hurried and a personal health budgets was neither discussed nor offered.

The staff provided by the agency came from all over and often turned up late. Lucy never knew who would turn up, had lots of different people in her home and there was a lack of both cover and co-ordination. Lucy was scared when George was absent – she felt the staff didn’t listen to her wishes and lacked the confidence to carry out some of the care. George regularly covered shifts and supported staff who didn’t know Lucy. He became ill whilst trying to coordinate and the couple began to struggle.

Additionally, Lucy’s pain increased and her mobility deteriorated after her physiotherapy was terminated and this prevented her from getting out of her home. This all had a negative impact on Lucy’s health and wellbeing.

The couple was offered a PHB and employed PAs with help from a support service to manage the recruitment, employment contract and payroll. The CCG agreed that Lucy could employ George, and he provided 4 shifts a week as a paid carer. The other shifts are covered by the PAs and with them all being trained at the Spinal Unit. Lucy also uses her PHB to purchase physiotherapy to improve her mobility and reduce her pain. George is committed to ensure he does the exercises with her on a daily basis.

Lucy feels more positive now George is supported and George was surprised how quickly the PHB process happened. The couple stress that the benefits should be explained to patients but highlight that support is critical to make the necessary choices. It has given them options and, more importantly, it means that that Lucy can get out.

Lucy was able to achieve:

• Consistent carers who know her
• Daily support to stretch and improve mobility
• Pain management
• Being able to get out
• Better support
• Sense of control
• Improved health and wellbeing
• Fewer complications
• Less likelihood of hospital admission
• Value for money

Lucy says…

“The PHB gives me control, makes me the boss, and lifts a weight off George’s shoulders.”

A personal health budget story

Betty was assessed for fast track care whilst in hospital. To go home, she needed regular care throughout the day but was reluctant to have agency care from different carers and readmission was likely.  Contact was made with a live-in care provider. They visited Betty in hospital and assessed her home. Betty had a bed delivered and installed downstairs to create a bedroom space for the live-in carer. Additional support was provided by District and Macmillan Nurses.

After a few days, a home visit was arranged to ensure the care package was meeting her needs. On arrival, she was sleeping peacefully and her son was delighted with the service. She had grown fond of her carer and trusted in her. In the days that followed and through choice, her carer moved her own bed downstairs in order to be close to hand.

Betty deteriorated daily but with everything in place for her to pass away at home and without the worry of returning to hospital.