The following is written by Amanda’s uncle. The family have given permission for publication of Amanda’s life in the hope that it will be of help to families in similar situations.
Amanda Coleman arrived at Mill Road maternity hospital, Cambridge, on 1st July 1964. She was the first born child of Graham and Judith Coleman. She was to become the cherished, only daughter of a close and loving family; their primary focus throughout life to ensure her continuing happiness and wellbeing.
Although Judith (Judy) had suffered a miscarriage some 12 months earlier, the Colemans had no reason to believe that Manda would be born with a learning disability; and this was not immediately apparent at the time of her birth. In the absence of advice from medical professionals, it was one of Judy’s close friends, a former nurse, who visited on the day of her birth – and cautiously suggested that Manda may have the condition known as Down Syndrome.
Complete surprise and lack of understanding left both parents confused and upset – exacerbated by the eventual intervention of the medical team who, on confirming the diagnosis, advised Graham and Judy to … ‘just walk away and forget her’. An attitude, sadly, but probably indicative of a fading era; with no regard for the welfare of both Manda and her parents – parents that absolutely adored her.
Mortified by the mere suggestion that anyone would even contemplate leaving their new born child to some unknown fate, Graham recalls Judy gathering Manda into her arms and getting her out of the hospital as soon as they could – overwhelmed by their need to protect her. They returned to their temporary home, a small bungalow in Cambridgeshire, where they lived with Judy’s parents – Betty and John. It was here that they started life together as a family of three. Money was tight, and Graham’s earnings as a farm worker were subsidised by Judy’s occasional work as a kitchen hand. Both grandparents were pivotal in Manda’s care, and continued to be a huge presence in her life.
When the bungalow became too small for their growing family, and as Manda’s needs increased, Graham and Judy found a home of their own. Manda needed constant attention, and the family needed their own space to focus on achieving ‘normal’ milestones – like eating and drinking, and walking and socialising.
Graham eventually found a better job at a farm in Newton, Cambridge – a position which came with a tied cottage. It was there, on 27th August 1965, that they welcomed their first son Martin. After another move to Hertfordshire, the family became complete with the birth of Ian on the 13th May 1971. A further promotion took the family to Suffolk in 1976 – where Rose Cottage become their forever home. John and Betty soon followed, and continued to play a huge part in the family’s life.
Despite these obstacles and regardless of her disability, Manda thrived at school and enjoyed a very reasonable education. At the age of five, her learning disability was assessed as being only slightly below average and, although this did deteriorate over time, she maintained a keen and active interest in all available educational opportunities.
By this time the family had moved to Suffolk, Martin and Ian were both attending local schools, and the Colemans encouraged all three children to embrace all available education. Judy, in particular, maintained a resolute determination to promote the children’s interest in personal development; Manda was treated as an equal and had the same upbringing as her brothers. This would be underpinned by a strong and enduring family bond where the children all enjoyed love and care in a happy environment. Having experienced the trauma of inappropriate medical advice at the time of Manda’s birth, Graham and Judy were both resolute that they alone would accept responsibility for her care for as long as circumstances allowed. Apart from eligible financial assistance, Manda always remained at home with her family – without any external intervention.
Sadly, Judy was first diagnosed with MS at the age of just 35 and, thereafter, her general health and mobility gradually declined until she finally became confined to bed in 2005. As a consequence, she became completely dependent on Graham who, apart from two hour daily visits, became her sole carer. Manda also assisted in her Mum’s care as best she could. Judy eventually passed away on 14th April 2020 – a loss which, understandably, caused Manda considerable stress and anxiety. The change in family routine also resulted in some negative behavioural issues, which became increasingly difficult to manage. Despite help from visiting carers, Graham was, by now, struggling to cope with both the loss of his wife and the effect on his daughter. This struggle eventually began to take its toll on his own health and welfare.
The family, therefore, considered the best interests of all involved and decided to secure more consistent and continuous professional care for Manda. Initial requests to Suffolk Adult Community Services proved largely unhelpful, and advice was spasmodic and inconsistent. Although some respite care was provided at accommodation in Saxmundham, this was not particularly suitable, and the continued delay in finding a more permanent solution was causing Graham extreme distress and concern. After some considerable time, ‘emergency’ accommodation was located at John Turner House, Rotterdam Road, Lowestoft – managed by Leading Lives. Ideally for short-term use, this was clearly not suitable for Manda’s needs.
Concerned about the impact of this delay on my brother and nephews, it was agreed that I should intervene and represent the family in attempts to resolve the matter. A request for a case conference involving all interested parties was agreed and convened at John Turner House on 10th September 2020. The meeting was attended by Graham, myself, a representative for Suffolk ACS and the Leading Lives Care Manager. The meeting concluded with the offer of a permanent placement at the supported living accommodation in Portland Crescent, Woodbridge, managed by Mencap, with a transfer date of 26th October 2020.
Throughout the lengthy process leading to a permanent placement for Manda, Graham continued to be concerned regarding the financial aspects of her care; particularly her financial security in the event that he pre-deceased her. Coincidentally, my daughter, Sam Dacey, also works for Mencap in Bury St Edmunds.
Although Graham had previously agreed to grant deputyship of Manda’s finances to Suffolk County Council, he was continuously left confused by a regular failure in communication and lack of information. It was on my own daughter’s recommendation that Graham made contact with Neil Cawthorn at The Professional Deputy Service, with a view to exploring the option of transferring Manda’s financial affairs and deputyship over to them.
Graham, Ian and I met Neil Cawthorn at Woodbridge on 5th February 2021 to discuss all aspects of service delivery, including a proposed action plan to cover needs, secure agreement and transfer responsibility of Manda’s deputyship to the PDS. Looking back, it seems unlikely that any of this would have been possible without the help of the PDS who Graham first instructed in early 2021. Since then, my own role as intermediary has been quite effortless by virtue of the very professional – yet very personal way – that the PDS conducts its business.
Both Neil and Fran are people that we have met frequently and who both engender complete trust and confidence. Information and accounts are always timely and accurate and if advice or help is needed a receptive ear is always available to listen. Put quite simply – the PDS has become an extended part of our family and our own burden of responsibility has been made so much easier with their care, help and support.
In the fall of 2023, Manda became seriously ill and her condition gradually deteriorated until she sadly passed away in the early hours of Wednesday 13 March 2024. Her dad was obviously devastated and I could only console him by reminding of his selfless commitment to both Manda and her mother Judith during their lifetime.
Afterwards, it became very clear to both of us that by enlisting the help of the PDS everything was already in place to deal with all necessary end of life matters. Realising the immense value of this association at this very sad and difficult time we also agreed that by sharing Manda’s story, others might benefit. Manda was a very special person and having the privilege of knowing her has enriched all of our lives. If the model we chose to deal with Manda’s affairs in the latter years of her life can help other families in a similar situation then it will be a fitting and lasting legacy to a very worthwhile life.
Gerry Dacey, Amanda’s uncle (April 2024)