How judicial review helped Anna continue to receive healthcare support When you have a child like Anna, there is enough to do without having to fight for everything else. You really do not have the energy for much else, but you have to fight for your rights - you are entitled to them. Anna was born with a range of mental and physical health challenges, including a severe learning disability, autism, deafness and spinal scoliosis. Her parents, Kathy and John, have been her primary carers since she was a child. She is now 30. For the first three years of her life, the family was not even aware of care and support services from the local council. They navigated daily life on their own. It was only after someone told them about this support that they started to get any help. This included much-needed regular respite care which meant that Anna could spend a few nights away from home to give Kathy and John a break. The physical and emotional realities of raising a child and caring for an adult with Anna’s condition are hard to explain to others. Anna needs constant care and supervision. When she gets frustrated, she can behave in a way that is a risk to herself and others around her. Something as simple as being able to sleep through the night is not possible. Kathy and John cannot spend time together in the way that others take for granted. They are always on the go and worrying about the future. Respite has been essential and the Council agreed to increase the amount provided as the years went by. In September 2018, a reassessment by the council concluded that there should be no change to the level of support provided for Anna. They also decided that she should be assessed for eligibility for something called NHS Continuing Healthcare. If found eligible, the NHS would take over responsibility for providing Anna’s care and support, including her respite care. At the start of the process, Kathy and John were assured that the level of care would not be change; it was just a question of working out who would pay for it, the council or the NHS. A few months later, the phone rang. Kathy and John were on a short weekend trip away, enjoying being able to switch off in the knowledge that Anna was safe. The call turned their world upside down. A decision had been made that Anna was eligible for NHS Continuing Healthcare, but this meant that her respite care would be cut in half, even though they had been told this wouldn’t happen. Kathy felt exhausted and hopeless. She could not understand why. No reasons were given, and it didn’t make sense. Anna’s needs had increased not decreased. John knew that would have to fight it. Respite, for people like us, is a must. If we hadn’t challenged that decision, I have no idea what we would have done. I suppose we would have just struggled on. Kathy and John were worried about challenging the decision makers because they would still have to deal with them on a daily basis. But they didn’t feel that they had much choice. They knew that such a massive reduction in respite care would have an enormous impact on their lives. They tried to sort it out themselves first by talking to the people from the NHS Clinical Commissioning Group (the CCG) who had been involved in the NHS Continuing Healthcare assessment, but they didn’t make any progress. They turned to the Central England Law Centre for help. Their solicitor went through everything that had happened. They sent a formal letter to the CCCG explaining that the decision was unlawful because it didn’t take into account Anna’s individual needs, and it had assumed that her parents would be able to step in to fill the gap that would be left by the reduced respite. The letter warned that judicial review court proceedings would be started if the issue was not sorted out. Within two weeks of sending the letter, the CCG agreed that the respite care would not be reduced immediately. This would allow time for a meeting with Kathy and John to review the whole situation. The next part of the process took some time, but the decision was finally reversed. Anna never lost a single day of respite care. Kathy and John are thankful that they had the legal help they needed but know that many people who find themselves in the same situation might not know what to do. This is why they want to share their story. If anyone ever came to me, I would definitely 110% say, yes, you need some legal help on this. If we hadn’t had the Law Centre, I don’t know where we would have been. We owe you everything to be honest.