A day in the life of a SEN mum – tedious, but real. The sort of low-level damaging drama that many of us live with, day in day out. A story of the value of kindness, of people doing a little to help when they can and of those that don’t.
Peter needed his new medication this week. This is what happened. It was a day of unnecessary ‘jobsworth’ from some, and kindness from others. I felt that the GP practice staff were unnecessarily unkind so I wrote this to the Practice Manager.
“Dear [Practice Manager]
I needed the support of your team yesterday and spent some time at the surgery. I wonder if you would be good enough to share this information with all those that were working in the reception area and with Dr X.
Peter is a patient of yours. He is 12 and because of long-standing mental health problems, he goes to school a long way from home. You don’t see him much as he is physically well and has had excellent support from the local CAMHS service since he was 5. When he was 9 he spent 19 weeks in a psychiatric children’s ward. You didn’t see him then either as it was all taken care of by his CAMHS team.
Occasionally we need your help and this week was one of those weeks.
Despite a(nother) very difficult 12 months, Peter returned to his most recent school placement last month feeling the best he has felt in years. Sadly he quickly deteriorated again and since then the school Therapy Team and I have been working hard to try to work out what to do.
I wish you could understand just how hard this is from my point of view. Peter is with carers who can’t possibly have the depth of understanding or the superhuman ability to offer unconditional support that a parent can. They are skilled, kind and do their best and but nevertheless, when he is unwell I take call after call from my angry, distressed and depressed child. He is miles away, craving a hug but he sticks it out because he knows it’s his only chance of a good future.
In the last few weeks the school psychiatrist, psychologist, speech and language therapist and occupational therapist have all assessed him and we have met, together with the teaching staff, to try to work out how to help Peter. The psychiatrist has liaised with our local CAMHS and we have taken Peter’s views into account.
Peter is desperate to feel better. Quite literally desperate. For years now he has seen his childhood disappear, missing months of school, unable to play or to join in with anything his peers take for granted. Things had started to get better and now he feels rubbish again. So more months of his childhood are being stolen and he just wants to live. To properly engage in life.
So this week it was decided he would start a new medication. He was desperately hanging on to start this new medication. Unfortunately, it transpired that the psychiatrist was unable to prescribe locally to the school and this is where we needed your help.
As soon as it became clear that we needed your help, Peter’s psychiatrist called you. The letter he sent you a few days earlier was not on your system (though my copy had arrived safely a couple of days before) so he sent it again using a secure (but more instant) route. The psychiatrist called back to ensure you had the information and emailed you asking for help.
Having done all of this the psychiatrist called me to explain. You see we both knew that Peter would be crushed if there were any more unexpected problems; he would see these as obstructions to him starting on the road to getting better again and it would be a set back that, quite frankly he could do without. Life can be black and white like that when you have autism.
We spoke and I reassured that psychiatrist that it would be OK. I said that the GP practice staff are supportive and helpful, between them they would issue a prescription as soon as they could and I would make arrangements to do the 3-hour round trip to take it to school.
I called the GP surgery and was surprised to be ‘hit’ by a wall of problems. ‘I don’t know. I don’t know when I will know’ and so on. There was no appetite at all to help but I did manage to find out that Dr X would be the GP involved and that he had 3 patients to see before the end of his clinic.
I needed information. I needed to know if the GP could help, in which case I would make arrangements to get the medication to Peter that afternoon. If the GP was unable to help then I would need to make a different set of arrangements to try to help manage the fallout that would have followed. We could do that if we needed to.
We just need to know.
In the absence of any information that I could use to decide what to do, I asked the reception staff if she could please let the GP know that I would come down to the surgery in about half an hour or so and wait there until someone could help – or at least let me know if the GP was willing/able to help.
I then had to consider Lily. She is 10 and had many months of support from CAMHS for post-traumatic stress – she is still having weekly support for this at school. The recent few weeks of Peter’s distress had affected her again and a sudden change of plans to will inevitably worry her. I made arrangements for school staff to let her know what was happening and asked a friend to look after her for an hour or so after school in case the GP was able to help us.
I later discovered that she had panicked at school (worrying about Peter), become tearful and been looked after by a teacher who “really listened properly and tried to understand”.
The teacher’s kindness made a big difference. Kindness does that.
When I arrived at the surgery I was welcomed by some ‘knowing looks’ between the staff in the reception area. I was given some information all pointing to the fact that no-one would tell me if anyone was willing to help – or when I would know if someone was willing to help. I was told that Dr X was having his lunch, would then make his calls and may or may not do the prescription before the home visits which were due after the calls. I explained that I would wait and asked if I could be told if Dr X left to do the home visits (as there was clearly no point me hanging around while he was doing these). I was advised that that was not possible as he may leave via another exit.
A twist of the knife was “why isn’t he registered with a GP where he lives when at school.” I am happy to explain, in full, why, as a mum forced to live away from her child, this comment was unhelpful, if you need me to.
I waited and took calls from the care staff and from Peter (who had had an allergic reaction that lunchtime). I tried to keep them informed but it was difficult as I had little useful information as to whether staff at the GP practice could help us or not. I spoke to the psychiatrist and explained what was happening.
The receptionist called me back to explain that the GP may or may not issue Peter’s prescription that day – he might but then again he might do it sometime tomorrow. That he would need to read the letter first.
Concern was expressed that the letter is ‘three pages long’. It wasn’t a rambling letter, written by an exhausted hospital junior doctor, it was less than 2 pages; a clear summary of the discussions with a simple treatment plan. I was advised by the receptionist that ‘not all medication that the tertiary service request can be prescribed by the GP’. Thanks for that unnecessary information. All we need is a standard anti-depressant.
‘The date on the letter is last week’, I was advised, (so it can’t be that urgent was implied). No one said it was urgent – clinically speaking – we were just wanting your help. My son needs some hope to know he will start feeling better soon and that the new plan was in progress and wouldn’t change. That’s all. If you couldn’t help we would have understood and then supported Peter though that disappointment. We didn’t need punishing just for asking for help. We just needed to know if you were willing to help.
I was in fact given the prescription after an hour or so. Thank you.
I made it to the chemist around the corner before I broke into uncontrollable sobs. They quickly unlocked the door to the consulting room, offered kindness, water and tissues. I sat crying whilst Peter’s prescription waited its turn (not too long). The kindness helped. Kindness does that.
I drove the 66 miles to school still crying for the first part of the journey.
Peter was so relieved that the medication could start and that the plan for this hadn’t changed. Change is very hard for him to manage, I know I have mentioned that but it’s worth saying it again. The relief that the plan had gone right, in combination with the hope that he might soon feel better, seemed to give him a new lease of life. The efforts of his psychiatrist and me were hugely appreciated. It was lovely to see him feeling more positive.
I trust that you will find some of the information in this feedback helpful as I know you are a service that is always striving to improve.”
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