Shaheena’s Story

Ishtiaq Hussain, aged 59, from Manchester, suffered cerebral damage from a subarachnoid brain haemorrhage, nine years ago. A personal health budget was used to employ a rota of seven personal assistants and buy essential equipment. As a result Ishtiaq’s health wellbeing has improved significantly, says Ishtiaq’s partner Shaheena.

Ishtiaq has aphasia, global brain damage and challenging behaviour. While he is able to walk around our home and understands what people are saying to him he cannot speak. He eats a soft mashed diet and has ongoing complex health problems such as myoclonic jerks and severe pain in his jaw and head. Ishtiaq used to work really hard and all hours of the day. He’s a dedicated family man. Our life as a family changed dramatically after his disability.

Before Ishtiaq received a personal health budget I was working full time as a teacher. Ishtiaq received NHS Continuing Healthcare funds, and agency carers used to be with him at home Monday to Friday from 8am-5pm, and then overnight Monday to Friday.

But it never worked out. Being with Ishtiaq can be intense and hard work. You cannot leave him for a second. He always needs at least one person with him, all day. Often the agency carers, who I felt were unsuitably trained, would not interact properly or engage with Ishtiaq.

As a result Ishtiaq would get angry, and might lash out. We had many crises. It was extremely stressful for Ishtiaq and myself. At one point it was suggested Ishtiaq be admitted into psychiatric hospital to monitor his medication. I refused, insisting Ishtiaq needed quality consistent care, not psychiatric intervention. Neither I nor Ishtiaq want him to be full-time in a care home. The situation never improved, even though I changed agencies.

It was Ishtiaq’s clinical lead who suggested we apply for a personal health budget. I did some research and thought this might be an answer for Ishtiaq’s complex healthcare needs. With help from the personal health budget brokerage team at Manchester City Council, I compiled Ishtiaq’s support plan. It included a lot of detailed information about Ishtiaq, his character, how to communicate with him and understand him. It listed details on Ishtiaq’s needs around personal hygiene, toileting, laundry, menus, and medication.

This support plan was used to form the basis of a personal health budget care plan. It also listed one-off required items, such as a washing machine (£300) for soiled clothing and a laptop (£200) so care workers could interact meaningfully with Ishtiaq using symbols and photos. Ishtiaq also needed a heavy-duty chair that would not tip over.

Ishtiaq’s personal health budget includes the cost of seven personal assistants (PAs) each employed on an 18 hour per week contract. I have organized the rota so that one PA is with Ishtiaq during the morning, another in the afternoon and another during the night. I care for him during the evenings. One of the PAs is more senior – and she supports the other Pas who are responsible for Ishtiaq’s everyday care and healthcare. They also, for example, take Ishtiaq for trips out, such as to the park.

The budget covers all contingencies, consumables, accountancy fees, and liability insurance.

When we first started recruiting the PAs I advertised at the job centre and the Gumtree website. But applicants were not always suitable.

I also use www.nw-pa.org, a website to recruit PAs in the north west. It is a real problem finding suitable people to work with Ishtiaq. I do the first recruitment interview, and Ishtiaq meets shortlisted candidates. If Ishtiaq doesn’t like someone, or they are nervous around him, then they are not given the job. I look for how well people interact with Ishtiaq. From the candidates that make it through the second interview, they complete several shadowing shifts before they work alone with Ishtiaq.

I have chosen to manage all the PAs and their rotas. I oversee everything – paying wages, all official paperwork, tax and national insurance payments, time sheets and holiday request forms. I have also devised all paperwork – from medication procedures and meal times to urine monitoring.

I feel that there is still an urgent general need for carers to be better trained in person-centred thinking and other training specific to Ishtiaq, such as acquired brain injury, manual handling and challenging behaviour. I think we need bespoke training for each team of PAs.

But the personal health budget has made a staggering difference for Ishtiaq. This is because Ishtiaq and I have control over who works with him, when and how. Ishtiaq is now treated as a person, and not a client or service user. It’s much more person-centred because there is more consistency and the PAs follow the plan, and communication is better because they are employed solely to work with Ishtiaq.

For example, I have printed different symbols and explained to the PAs how to support spoken communication by the use of a picture communication system. They show Ishtiaq a choice of activities and Ishtiaq gestures towards those activities he would like to do. Ishtiaq is very clear when he doesn’t want to do something.

Ishtiaq still has challenging behaviour, but he is now happy and usually cheerful, and does things that are of interest to him.

Before the personal health budget, if Ishtiaq had increased seizures he would become more aggressive. But our carers are better trained to look out for such changes, and so medication can be altered accordingly.

Plus, our PAs will give Ishtiaq pain relief for his jaw pain as soon as he requests. Previously, because agency staff did not know Ishtiaq sufficiently they missed him communicating his pain.

On a nutritional level our PAs understand Ishtiaq’s dietary requirements. When we went through the agency someone made a pizza and put pepperoni on it and another gave him a McDonalds burger. This was despite Ishtiaq’s support plan stating he is a Muslim. I now have a food diary and staff follow it.

Not everyone with a personal health budget needs to take on all the managerial and financial responsibility as I have done. But I would still recommend a personal health budget as it is the only way the person can become the heart of everything. Previous care packages for Ishtiaq cost about £1000 per week more. The personal health budget is just so much better value, for all the reasons listed above. To be honest, it’s the best thing that’s happened to Ishtiaq’s care.