We feel that removing Pete’s current care package would be detrimental to us as a family for the following reasons
- Pete is terminally ill and any change will cause him great distress which may cause him to deteriorate further
- Pete’s carers have all looked after him for at least 6 years and have an amazing ability to understand his needs despite his extremely limited communications skills
- The NHS has a limited ability to fund a social care package and so the best they could offer would be equivalent to what Home-care currently do ie personal care with up to 5 visits a day and would not be able to fund sitters.
This means that I would be unable to work or socialise, take my daughter to and from school, spend time with her outside our home or run children’s and youth clubs. I would have to ask friends to help out whenever I left the house for any reason, even to buy groceries.
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