Thursday, 9 May 2013
You may remember my post regarding the situation with trying to get a special bed for Jessica as she has outgrown her cot (Trying to build for the future). Since then things have moved on a bit.
Following Emma’s complaint to the Staffordshire Social Services regarding the waiting list for an O.T. assessment etc., and other people writing/speaking to them on her behalf (including a local councillor) she did receive a visit from the Manager of the Occupational Therapist Department to discuss the complaint and to explain the position more fully.
Unfortunately the position has not changed at all, other than the Manager did agree to move Jessica to a category 1 due to the stress that was obviously being caused to the family. She also said that she felt that Emma was right in thinking Jess’s cot was too small and therefore not suitable for her. She suggested that Jess should have a mattress on the floor so as to avoid any danger of her falling out of the cot.
Emma pointed out that whilst Jess was awake (she often keeps waking just after going to bed but at the moment is in her cot) she would just keep crawling around the bedroom and would be chewing the skirting boards, pulling herself up on furniture etc., and would therefore be totally unsafe. The lady agreed that the room would need to be made safe which would include replacing the skirting boards with plastic ones, taking out the existing window sill and replacing with a plastic equivalent, removing all furniture out of the room etc. All of this was obviously going to cost money and an assessment would have to be made before any help could be given by Social Services, but yes.. you’ve guessed it, the waiting time for an assessment was about 8 months at present due to staff shortages, even though Jessica had now been given a category 1 status.
Emma still held firm to the belief that the only thing that would keep Jessica safe during the night was the specialist high sided bed that she had seen and one that is used by a lot of children in a similar position to Jess. These beds normally cost around £5,000 or more but the charity Newlife Foundation can supply these if there is sufficient funding but the application must be accompanied by an occupational therapist assessment report.
This was all very stressful. On one hand it was confirmed that the cot was not ideal and Jess would be better off on the floor, but then it was also pointed out that the room was not safe as it was for her to be on the floor and the help needed to put it right was not available either at present. Talk about being caught between a rock and hard place!
In fairness I think the O/T Manager felt like that too. She was new to the job and was trying hard to get more staff apparently but the backlog was so big it would take a while to have an impact. Government cut backs were blamed and it was suggested that everyone should write to their local M.P.’s and make them aware of the impact these cuts were having on much needed services. Although she could not sanction a specialist bed was needed for Jess ( no assessment) she was prepared and did infact speak to the charity Newlife who confirmed they may be able to fund it if they had it in writing that there was such a long waiting list in Staffordshire to get an O/T assessment. The Manager did agree to put something in writing.
That night we went out for a family tea as tensions were still running high. During the course of the meal Emma received a text from one of her friends who is also a teacher for Waterbabies, saying that they had seen the difficulty Emma was having and also the stress she was under and they wanted to help to raise money for a new bed for Jess.
This text had an amazing impact. First of all I burst into tears when I read it which is not good when you are sitting in a crowded restaurant with your six year old Granddaughter next to you, secondly Emma looked happy for the first time in days. There was a light at the end of the tunnel.
The text also got Emma thinking. She is passionate about children learning to swim and enjoying the water which is why she loves her job . She started to talk to Natalie about the sponsored swims that her friends had suggested they do and straight away Natalie said that she wanted to help.
Natalie as you may have guessed loves swimming. She also loves her Sister. She said that she wanted to raise money so her Sister could get a new bed, she thought that some of her friends might like to join in too. The next day Emma had come up with a plan, she was going to organise a sponsored swim for Natalie and hopefully other children from Natalie’s school (Emma already helps voluntarily with the school swimming lessons so is known by many of the pupils).
So the pool has now been hired and the date set. Emma & Ben want the money raised from this to go directly to Newlife Foundation so if Newlife are able to fund the bed then some money is going back into the charity.
The friends from Waterbabies are also organising a 24hr swim (details still to be arranged) as they want to raise as much money as they can towards the cost of a new bed for Jess. Thank you just does not seem enough but it is all I can manage at the moment as I am in danger of tears falling onto my keyboard!
Please take a look at Natalie’s Just Giving Page below and if you are able to donate it would be very much appreciated. If you are in Stafford on the 29th June, then come along to Stafford Leisure Centre at 4.30 and support the children it would be lovely to see people there.
NATALIES JUST GIVING PAGE
Above all, thank you for reading these blogs and sharing, your continuing support means a lot, it is not just about money, knowing that people care is priceless.