"Treatment toward my daughter"

My daughter has been in and out of hospital from the age of 12 she is now 20. Regardless of her age she has developed severe anxiety and suffers from panic attacks which are brought on with the fear of been a patient and needles, due to having had bad experiences over the years. 

Firstly I would like to express that this is not a criticism on all health care workers- I my self work within the NHS and have done so for many years. I suppose this is why this is so upsetting to write and I find myself angry at the service for the way they treat people. 

My daughter has hyper mobility disorder which is a connective tissue disease and is under-investigation for Ehlers danlos syndrome. Which is a recognised disorder within the NHS , yet ignored by many. She has severe lower back pain which causes mobility and daily living is an issue for her and has been on several medications for same with no success. She/we have been seen by several specialists that signpost us to other services or have said that this might be in my daughters head and she requires CBT or psychology. Having done both 2x we are no further forward. We have had to go private due to waiting times and lack of support from the NHS. 

My daughters back issues have been that serious that the need for an ambulance has been requested on occasion, due to her not been able to walk.

NHS 24 were called one morning about 8 months ago to be told that a Dr would telephone with advice. They suggested an ambulance which they would arrange. We waited for 2 and a half hours with my daughter in agony and having to be carried to the toilet. To find they did not arrange the ambulance and were told if we still needed one it would be another 2 hours.  

The same week my daughter was seen by our GP at home who suggested my daughter get out her bed and walk about. I her mother who was having to shower and take my 20 year old daughter to the toilet due to not been able to weight bear or walk was left very upset and not taken seriously. I was taken to the side and it was suggested that I step back and my daughter is not to put so much on myself and she feels that her anxiety is causing her not to want to get better! 

That week another NHS 24 call was made and an ambulance attended having to take my daughter out by chair. (This was their decision not mine) 

When at A&E I was met with resistance and non empathetic staff. My Daughter was given double the dose of co-codomal whilst in A&E which was ignored when I had highlighted same. 

Also, it is or should be clearly documented that she takes bad reactions to the codine.

My Daughter was asked to provide a urine sample which she did with great effort and difficulty for this to be left in the public toilet for our duration (2hrs) again highlighted and again this was ignored. The member of staff was abrupt and had an urgency about them, stating that there is very little they could do. Provided my daughter with crutches and told to continue with the co-codamol. 

Due to our location St John’s is our main hospital and the response we get every time is far from supportive. I feel that I am treated as the over protective parent and my daughters physical and Mental health is very much ignored. 

Recently my daughter obtained a head injury/open wound whilst out on a walk - the ambulance crew attended (who were amazing) very caring and supportive. They reassured my daughter and made it clear to the A&E staff that my daughter suffers from high levels of anxiety and takes panic attacks and may require mum (my) assistance. The receiving member of staff, in an abrupt manner, told the paramedic that the patient will be seen and mum can wait outside, while wheeling my daughter in to the waiting area- covered in blood and with an open wound to her forehead. 

When seen by the triage nurse it was very clear that the staff had came to collect my daughter as a team. I feel this may had been incase I had said something. There was no eye contact made from either of them whilst ignoring my daughters request for me to come through and support her. 

She was shaking, crying and very anxious at the unknown. 

Once seen alone and scared with no reassurance My daughter was wheeled back to the waiting area after having been cleaned up. No eye contact and/or instructions where given as to what would happen next. My daughter was upset at having been asked why she was in a wheelchair and if she could walk back out to the waiting area. She felt she was been questioned in a negative way. To be clear the paramedics placed my daughter in the wheelchair due to head injury and being dizzy! 

Due to my daughters anxiety levels she is not able to retain information hence my presence. However, this was ignored. I completely understand that due to the current pandemic we are in and how much pressure the NHS is currently under, times are difficult. However, what I don’t understand is the lack of empathy, understanding of someone’s mental health or taking a minute to hear the patient and not worry about targets and treating people as if they are a hassle. 

I/we feel very let down by the service and their attitude toward people. Boundaries are important, but treating people and making them feel as if they are a burden and are not taken seriously is not how a service should be!