Daily Archives: November 25, 2017


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It was an absolute honour for me to be asked to share my views about parent caring during this Carers Rights Day 2016. The Local carers team did an amazing job setting this up and putting it all together. Many thanks to the Citizen newspaper for publishing the article. I hope that by creating more awareness, many parent carers will find the courage they need to confront all the uncertainties that lie ahead of them with their children more easily. The UK government tries to provide support through various agencies like the Carers UK,  Social services, Community paediatric teams, Community nurses, and doctors within or outside the hospital setting. In some areas hospice care is made available to families with severely disabled children to help provide some well deserved respite from care while ensuring that their children are still cared for in a safe enviroment. If carers do not come forward to access and the explore various support outlets, they just remain there unused. This defeats the purpose for which they were set up. This is why it is essential for Parent carers to access every possible help and support available. There is really no need no need to carry the burden of caring for a child alone. There is no need to habour fears about consequences of accessing well deserved support. Most of the fears will be reduced once parent carers begin to ask the right questions about what is available to ease the burden of care life throws at them with the existence of the illness of their child. There is a saying that a problem shared is halved. True, but I always like to think that this only holds if you share it with the right person. Getting support, asking questions and letting others help will be synonymous with sharing your problem with the right person. It is  truly the right of every carer to access this support. You are not being too demanding you are just being wise and proactive. That on its own deserves applause! I decided to share the article here To show my support for awareness being created on this Carers Rights day. Thank you as always for your support and readership. I know you do not realise it but every time you click, read and share my work you not only spread the word about what you have read but you support me on my own journey. It is strengthening that you find my work useful. Thank you. So sit back, relax and enjoy the interview…. Carers Rights Day takes place on the 25th of November, a national campaign which brings unpaid carers, support charities and local communities together to help carers understand their rights and the support they are entitled to. Carers MK supports over 4500 unpaid carers in Milton Keynes providing essential advice and information to those providing unpaid care to a relative or friend who due to illness, disability or frailty cannot manage without support. Case Study:  Parent Carer, Mrs Hope Carers UK support those providing care and support to a child who is ill, has a physical or learning disability or additional needs. Parent carers face huge uncertainties, stresses and challenges when faced with coping with their child’s condition, and it is important that they receive emotional support, advice and information to help them in their particular caring situation. Parent Carer Mrs Hope has a four year old son who has an inherited metabolic condition called Propionic Acidaemia. His body cannot break down proteins but builds toxins in his blood. He was diagnosed when he was just 3 days old after he went into Coma due to an overload of toxin called Ammonia. and in February 2016 was admitted to Great Ormond Street hospital with chronic pancreatitis. He cannot be fed by mouth but with specialist intravenous feeds called TPN into a big vein in his heart. Mrs Hope is now juggling visits to Great Ormond Street while also looking after her 5yr old son Mark. She and her husband take turns in shuttling between their local hospital  and London to care for the boys. It is extremely strenuous on the whole family, emotionally, physically and psychologically.   Q  &  A   What are the biggest challenges you face as a parent carer? My biggest challenge has been accepting that my 4yr old son will not be perfect in every way a child should be. It was very devastating when he was diagnosed. Initially I felt overwhelmed with guilt because I learnt that the condition was an inherited one. Simply meaning that it came to be as a result of mine and my husband’s matching but defective genes. The realisation that his condition was incurable and degenerative fuelled my sadness for him. It was also hard to make his 5yr old brother understand that his younger brother was different. My 4 year old also suffers from severe autism (as a result of the Propionic Acidaemia). This meant that the 5 yr old brother initially struggled, believing the 4yr old deliberately chose not want to play with him. Our acceptance of the whole condition early meant we were able to reach out for help and support for our family.       How do you manage caring for your son in hospital while looking after other members of your family? I have managed considerably well since I began letting everyone in where safely possible. With a son as delicate as my 4 yr old, I initially felt I needed to do everything for him myself to get things done properly. Unfortunately, I struggled that way. I learnt to share the responsibility for him with the nurses at my local hospital or GOSH London (depending on where he was admitted). This freed up time for me to go home at least once a week to be a mum to my other son- to do the school run, take him to the park or just cuddle him. I have fed off this bit of normalcy. […]

Interview with the Local media