"Consistently let down"

About: Specialist services / Gender Identity Service (GIS)

(as the patient),

I have felt consistently let-down by this service since I was referred to them.

I appreciate that the unacceptably long waiting times are due to oversubscription and underfunding, but there is also a serious issue with lack of communication within the service, leading (in my experience) to frequent mistakes being made - such as, but not limited to, appointments being missed out, appointment bookings being repeated unnecessarily, miscommunication and lack of communication.

It is often impossible to contact the service via telephone. My experience was that the reception staff were unable/unwilling to discuss patient details with patients, however as a patient I was unable to contact doctors or nurses via the phone. My emails frequently went ignored. Letters which should always have a copy sent to the patient were often not sent to the patient. I've been told I have to specifically ask for a copy of the letter about my progress each time. I am frequently not updated about their progress and I've found it difficult to get information about my own medical records. 

When I initially started being seen by the GIC, it took repeated nagging to get them to change my title to my correct title, which is really unacceptable considering the nature of the clinic.

More than one doctor has shown lack of awareness of clinical and surgical procedures. I've been told on numerous occasions 'I don't know' or flat-out misinformation about surgical procedures I'm hopefully going to be undergoing in the future. I've also been told that I'm 'unusual' for asking perfectly legitimate questions (that the doctors have been unable or unwilling to answer).

In general, I have a complete lack of trust in this service and can only hope that they improve a great deal over the coming years as I am nervous at having my future care in their hands.

Responses

Response from Catherine Williamson, Senior Practitioner/ Clinical Manager, Gender Identity Service (GIS), Sheffield Health and Social Care NHS FT We are preparing to make a change

Dear LilyF

Thank you for taking the time to give feedback about the Gender Identity Service. I'm sorry to hear that you feel you have been so let down by Porterbrook.

As you acknowledge, gender services, nationally, are experiencing ever increasing demand. Porterbrook Clinic is acutely aware of the unacceptable waiting times and the impact on individuals waiting for an assessment or an appointment. The national GICs are working with NHS England to develop an operational model to address the on-going issues. Porterbrook continues to work to refine our clinical and operational systems.

Communication of individual positions on the waiting list is an extremely complex problem. Waiting is not a ‘linear’ process and is an oversimplification to consider it a ‘queue’. Individuals may wait for different time periods dependent on their individual clinical need and according to the availability of the clinical resource that may be able to meet those needs. The clinic has tried a variety of methods of communication, none of which have proved satisfactory to a percentage of the people. The clinic is working with IT to consider potential solutions, but currently we do not have the resource to commit to a rapid solution. New changes in the NHS England model also suggest that there will be a central ‘national’ list with appropriate support that may be a positive development for people in understanding the waiting periods. In the meantime, the clinic does regularly update the website and does everything in its power to answer enquiries at an individual level with the very small administrative resource available. We have a very high amount of phone calls and emails which we endeavour to respond to in a timely way. We are continually looking at ways to improve this.

The service recognises the existing website needs to be improved and could include more detailed information. We recognise that communication could be improved. To this end, we have produced an information leaflet about the pathway, which will be available on the website and also given to each person referred to the clinic. This is currently in production. We encourage everyone referred to the clinic to attend the Pre-Assessment Workshop which is held every month.

As we are such a small team, we do not have the staff capacity, currently, for medics and nursing staff to answer patient queries by phone. We are looking into ways of answering questions in other ways. For example, we are exploring the use of Skype. Patients are encouraged to use their appointments to discuss any questions they may have.

Our doctors are highly-experienced clinicians in their field. We are sorry that you felt you were misinformed. We are unable to respond to this, specifically, on this forum. However, you are very welcome to contact the clinic if you wish to discuss this or any of your other concerns further.

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