"Not getting care after claims made by Oldham ICC district nurse"

About: Pennine Care NHS Foundation Trust

(as the patient),

My story is about my daughter who has a very severe disease called generalised, severe recessive dystrophic Epidermolysis Bullousa  (EB). The symptoms of this illness cause lesions and scores and skin peeling all over her body including her digestive system and there isn't a cure for it.

Her skin has to be covered by special dressings. There is set method in the way these dressings are removed and replaced. If done incorrectly then this produces extreme pain and discomfort to my daughter. Therefore it a properly trained nurse is required to attend her home to change the dressings.

She attends the Oldham Royal hospital for treatment and she also attends St. Thomas hospital for her skin disease problem with a P.A. as she can not travel unaided as she is classed as disabled.

My daughter also has psychological problems due to this illness and she has had suicide attempts in the past and she still thinks life is hopeless and not worth living. She also doesn't trust people easily. She's got depression and she's got fears about being in public places because her disease impacts on her self image and self-esteem. She goes to her GP's clinic only for a very important purpose. She goes to see her consultant in London every six or three months., and her dentist in Birmingham every six months. Most of her time she spends in her room.

I have written this information to give you some back ground knowledge about my daughter, so you understand her position.

A District Nurse came to change her dressings in August 2015. Unfortunately the nurse did not do this correctly and caused my daughter to bleed from open wounds and put her in tremendous pain and discomfort. This got to the point where she could not stand it any more and snapped. She left the lounge and went into the kitchen where she obtained a knife and headed for her bedroom where she wanted to kill her self to stop the pain she was in. I chased after her and took the knife from her. This is difficult for to do as I am also very badly disabled.

The district nurse was sat on my bed settee and never left the room. At no time was she threatened or her life put in danger. The nurse left soon after this incident. My point is this, if the nurse had the job correctly then none of this would have happened.

The outcome of this was that the nurse reported back to senior management informing them that she had been threatened with a knife (which was totally untrue). The District Nursing organisation then insisted that two nurses would attend along with a police woman to make sure of the nurses safety.

At first my daughter refused because to have her wounds dressed she had to undress and because of her affliction did not want to do this in front of a non medical person and the embarrassment she felt by the way she looked. After I had a long talk to my daughter and pointed out that once the police officer knew there was no danger to the nurses then she would stop coming. My daughter agreed to this and I informed the nursing staff.

There has been no visits to my home by any nursing staff since this incident, a qualified nurse can change the required dressings in about an hour. If I have to do it then it takes me hours and at the end I am really very tired and need to rest. I have to change my daughter dressings at least three times a week. I'm as I have already stated very disabled and have careers.

To go back to the knife incident, the whole thing was witnessed by my cleaner who was in the kitchen the whole time as she was doing the ironing. She has made a written statement regarding what she saw and heard. One other point I should make is that the nurse kept on telling my daughter that some one else should change the dressings. I told her to drop this subject as I could see it was upsetting my daughter but she ignored my request. My daughter needs a proper qualified nurse who knows what she is doing to remove and replace the required dressings.

All I want for my daughter is her legal rights and be properly looked after. Therefore I turn to you for your help to get what my daughter what she justly deserves.

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Response from Pennine Care NHS Foundation Trust

Thanks for taking the time to get in touch through Patient Opinion. We take comments from patients and their relatives very seriously and I am sorry to hear about your experience.

It is Pennine Care NHS Foundation Trust policy to report incidents and all members of staff are required to follow the procedure in relation to this.

Having spoken to the senior manager of the service, I understand the service has been in contact with you directly about arranging a clinic appointment for your daughter. However, If you'd like to speak with someone outside of the service, please do contact our Patient Advice and Liaison Service on 0161 716 3178, or the complaints department, on 0161 716 3083, who would be happy to discuss this further.

Thank you.

  • Koke thinks this response is helpful
    {{helpful-1}} other {{helpful-1 == 1 ? "person thinks" : "people think"}} so too

Update posted by Koke (the patient)

It is helpful and I will contact them on the number they wrote them down in the response's email ,thank you so much.