Disabled teenager ‘failed’ by health trust due to lack of support, says mum

A mother who is “near breaking point” has said her disabled daughter was “failed” by the NHS.

Frustated Sarah Clarke, blasted her local health board after enduring a three year wait for her daughter, who suffers from a rare genetic disorder, to receive the care she needs.

Sofia Clarke, 14 was born with Rett Syndrome, a condition which affects the development of the brain and causes severe physical and mental disability.

Sofia, who is non-verbal and confined to a wheelchair, requires 24-hour care from mum Sarah and dad Maurice.

They have developed their own system of communicating with Sofia so they are always able to keep on top of everything that she needs.

However, Sarah explained over the past three years since the family moved from the Belfast Trust area to the South Eastern Trust, her daughter has not received the help and support that she needs and has been waiting years for new equipment that would make her life much easier.

During that time, Sofia has also developed Scoliosis, with the bend in her spine going from a 20 degree bend to a 50 degree one and while she has a back brace, due to her condition she finds it very difficult to wear

Sarah told BelfastLive : “When we were living in Belfast we never had any real issues with Sofia’s care and it was not until we moved to Dunmurry and changed trusts that we started coming into problems.

“Three years ago Sofia was assessed for a new wheelchair, a hoist and bathroom installations that would allow her to have a bath easier but then everything seemed to go quiet.

“No matter how much I tried I wasn’t able to find out what was happening with the equipment.

“Then a year ago she was assessed again for the same things and afterwards we heard nothing again.

“She was still using the original equipment that she had received in Belfast, but because we were no longer under that trust, we were unable to have any of those things fixed if they broke.

The NHS has apologised to the Clarke family for any upset that may have been caused

“Sofia requires 24-hour care from my husband and I and we have to physically lift and hold her when we give her a bath because we don’t have any of the support that we need.

“This is not easy because she has grown to nearly the same size as me, but we manage.

“We just cannot understand why we have had to wait so long to get the support that our daughter requires and the silence and the lack of communication has worn us down to near breaking point.”

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Sarah also said that the family were also dealt a blow before the summer when they were told that respite care would no longer be available for Sofia and she would have to be assessed for this another time.

She continued: “Over the past year we have probably had three days of respite care for Sofia and then just prior to the summer we were told that this wouldn’t be available for her and she would have to be assessed again.

“It just felt like things were constantly being taken away from her and if it wasn’t for the support of a wonderful aunty, we would be completely lost.”

The family are also starting to fundraise in order to try and get an EyeGaze for Sofia so that they will be able to meet her needs and communicate with her better, because at the moment they have to rely on a series of different cards and naturally understand her feelings.

Sarah said: “We know Sofia inside and out so Maurice and I are always able to understand what she is feeling, what she would like to do, or if there is anything wrong with her. But even then we have to go through a small checklist to make sure we get to the root of things.

“To have something like an EyeGaze where Sofia would be able to communicate with us easier would completely change her life and allow us to learn even more about her and how she is feeling.”

Last week, Sarah said that the family finally got some progress with the health trust when Sofia was assessed for a third time for support and is hopeful that now things will be able to move forward with her care.

The South Eastern Health and Social Care Trust has apologised to the Clarke family for any upset that may have been caused.

A spokesperson said: “The South Eastern HSC Trust would like to apologise to Sofia and her family for any upset caused.

“The issues raised by Mrs Clarke have been brought to the attention of the Trust’s Occupational Therapy service in the last number of weeks.

“In this time Sofia’s case has been allocated to a Senior Specialist Occupational Therapist with a full review of Sofia’s needs undertaken. A treatment plan has been discussed and agreed which will include Sofia’s seating, bathing and wheelchair needs.

“The Trust will continue to liaise with Sofia and her family regarding her ongoing treatment.”

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