NHS Oldham CCG

Personal health budget case study

For reasons of confidentiality the patient’s name will remain anonymous and for the purpose of this paper he has been named John.

Patient’s background

Until the age of 28 years John had led a very active sporting life. He ran two local businesses, had taken a year out to travel around the world, played numerous sports at amateur level and had educated himself at first class honors degree level. He was always a very social and happy person. John was also in a long-term relationship and was looking at starting a family. 

John was travelling in India and sustained a high level spinal cord injury. He is now tetraplegic. Since his injury, John has tried to maintain as independent and fulfilling a life as possible. If he was to describe himself, John would say he was an independent person who is very active in the disability community. John is a person who has no specific diary but loves variety. John keeps himself extremely busy socially and in the voluntary community and is proud of how he has retained his independence.

John now manages a company which provides services around supporting disabled people. He is a trustee of two national charities, which support people to achieve independence while still living with disabilities. Maintaining his life choices, independence and having the ability to manage his own environment is essential to John and it is central and fundamental to him feeling in control of his life.

John’s health journey

John is unable to perform physical activities due to the level of his injury. Subsequently he requires assistance from others to perform any physical activity and requires support with all personal and social care needs, such as getting showered and dressed, moving and transferring, eating, drinking, meal preparation and taking medications.

John is dependent upon the support of his personal assistants (PAs) to support all of his activities of living. He uses an electric wheelchair; a mobile hoist to move and transfer him and he has access to assistive technology to use his computer. All of this has an effect on his emotional wellbeing.

Periodically, his disability and dependence has an impact upon John’s emotional wellbeing and behavior and he can on occasions become extremely frustrated. This can manifest itself in numerous ways and John can socially isolate himself at times and become depressed.

John attends a counselor on a weekly basis which he funds himself; and he takes prescribed medication from his GP during periods of sustained depression. These episodes of low mood can be unpredictable.

John has a long term urinary catheter to help him manage his bladder and regularly experiences urinary tract infections. Due to the nature of his disability and injuries John is at risk of experiencing episodes of autonomic dysreflexia. It is important therefore that he receives daily bowel and bladder management from staff (PA) who have the relevant knowledge and skills and from PA’s who know John well.

Due to John’s immobility he is at high risk of developing pressure ulcers and requires regular and frequent pressure relief from his PA together with the use of pressure relieving equipment to assist. When John is in bed or chair he is completely reliant on others for everything.

John has had previous experiences of pressure ulcers and knows how debilitating and painful they can be, so he is keen that measures are in place so they are prevented.

John is also prone to chest infections. As he is immobile, secretions can become thick and sticky and prone to infection. On occasions his PAs need to provide some basic chest physiotherapy to loosen any secretions he has and assist him to cough. A chest infection can be extremely debilitating for John, restricting his activities even further.

John’s reasons for requesting a personal health budget

John’s longer term goals are to directly employ all of his staff team providing him with the choice of who enters his home. He aims to phase out the use of agencies and become responsible for the recruitment and training of his own personal assistants, who are reliable and consistent.

He would like to see personal assistants treating the job with professionalism, respect and honesty and he would like to see continuity and dedication, from people who take the time to get to know him and his needs well.

To assist him with the above John has decided to commission a ‘Broker’ from his indicative budget who will support him with the recruitment of the support team, his backup support team, training his support team and his finances such as payroll and book keeping.

Contingency plans have been made to cover incidents when John’s PAs may be sick or take annual leave. If John becomes ill, his team of PAs will be experienced and knowledgeable enough to manage his needs without the need for additional support.

Breakdown of cost for the personal health budget

John has completed his own breakdown of costs for his Personal Health Budget from his indicative budget. This covers all outgoing costs associated with employing his own PAs. There is an annual contingency fund set aside of £3.01. If some or all of this contingency fund is unspent, the balance will be refunded back to us and identified as an efficiency saving.

Engaging and communicating with John

John was very suspicious of his review for NHS Continuing Healthcare (CHC) funding, and relationships could be described as tense. John seemed to be under the impression that his care package may be reduced or discontinued.

When further information to support his application was requested from his Complex Case Manager by the CHC Review Panel and his application was deferred, this appeared to further fuel his anger and suspicions.

Following long and difficult meetings and discussions with John, he was reassured that, as commissioners of his care package we needed to be assured that he had a primary health need and the support package that was commissioned was safe, effective, efficient and provided value for money in achieving his health outcomes.

In communicating with John on a regular and frequent basis he was assured that the review was about his needs, that it was ‘patient centered and focused’ and that the team welcomed his contribution, opinions and concerns, aiming to improve his experience.

The team worked hard in convincing John that they did not want to take away his control or dictate his care package, the aim was to work with him in partnership.

John informed his Case Manager that he was interested in a Personal Health Budget (PHB). He was advised of the process step by step and kept informed at each stage. As John was unable to open letters via the post due to his disabilities, he preferred to communicate all correspondence via email. All letters and requests for further information were therefore made by email, telephone or face to face visits.

John completed his own support plan for the Personal Health Budget initially, he welcomed it. After all he is the best person to describe his own needs and how these can be met. He was also supported by the team in its final completion. Once the support plan was submitted, it was considered by the CHC Review Panel and any uncertainties discussed with John.

John was really eager to finalise his Personal Health Budget and ensured that any information requested was received in a timely manner, in order to prevent any delays. The team sensed his eagerness but at the same time have a duty to ensure that process and policy was being followed.

A meeting was held with John soon after the Continuing Health Care Review panel meeting and John was advised that his Personal Health Budget had been agreed and that he could commence planning to recruit his PA team.

John left delighted and enthusiastic. It is envisaged that the recruitment, training, risk assessing and Disclosure and Barring checks can take up to three months to complete. John will continue to communicate with his Complex Case Manager and update her on progress going forward.

This is our first Personal Health Budget and it is considered to be a model of good practice, to be utilised as a benchmark, to enable future patient PHs’ to build on and improve.