The other day when on the way to yet another appointment, I got to thinking about all the individuals we’ve come into contact with since the start of this. How many people have we met? More than 10? More than 20? So I started making a list…
- Speech and Language – someone who did the initial assessment, a community SLT and, just this week we’ve started appointments with someone who has more specialism around long-term language issues.
- Portage – our regular weekly visitor. Also her boss, who is an educational psychologist.
- Paediatric consultant locally, who did the first investigations. Assessment team in the hospital who took the blood/urine samples.
- The team from Manchester Willink Biochemical Genetics Unit – Consultant, specialist nurse, ERT nurses.
- Audiology (for hearing tests), Ear Nose and Throat consultants, and Physiotherapy – all both locally and in Manchester.
- All the people involved in his operation – the surgeon who did his portacath, anaesthetists, etc.
- The nurses in the High Dependency Unit who looked after us following the op.
- Cardiology clinic for ECG and ultrasound on the heart.
- X-ray department to check for skeletal abnormalities.
- Paediatric Psychosocial team to assess his development and the impact on our family.
- Children’s Social Services – responsible for co-ordinating respite care.
- Healthcare at Home – just this week we’ve met one of the nurses who will be coming here every week to administer Pudding’s ERT.
Not counting others who I have spoken to on the phone but not yet met.
So by my reckoning that comes out at 36 people in the last 10 months – most of whom have been utterly charmed by my dear boy’s cheeky grin and funny ways.
I have been so grateful for the care and support we have been offered by the NHS and other organisations. Sure, I know there have been occasional hiccups and frustrations with the ‘system’, but almost everyone we have come into contact with has done their best for us; whether that is in little ways like asking how we’re doing, or by staying far longer than their contracted hours when I needed help. Bless every one of them, and long live the NHS!