PATIENT PARTICIPATION 
Learning Disabilities Group at 
Caen Medical Centre
on Wednesday 12th February 2020

Attendees				
Dr Alex Bishop			
Health Care Assistant, Katey Clark			
Julie Tanton, Practice Administrator
Sharon Luke
Beth – Support Worker from Westmead Home came with Sharon
Stefan Parsons
Julie Parsons – Stefan’s Mum
Gemma Simms – Stefan’s Enabler
Phil Howe, Senior Learning Disability Primary Care Liaison Nurse
Linda Hancox, Senior Learning Disability Primary Care Liaison Nurse
Karen – Mental Health Worker (DPT) on placement with LD Team
			
The practice invited 10 patients who appear on our Learning Disabilities register to attend today’s patient participation group meeting, the practice LD register has 32 patients in total.  Of the 10 patients, 5 responded that they were unable to attend for various reasons.  2 patients agreed to attend along with their enabler/carer and family members.  The remaining 3 were contacted by telephone to discuss the meeting and gently encouraged to attend but they did not accept the offer.  After discussions the practice team felt that it was still worthwhile going ahead with the meeting and this was reiterated by the Learning Disability team when contacted.  

Welcome/ Introduction
Dr Bishop started the meeting by thanking everyone for taking the time to attend.  She then asked everyone to introduce themselves so all participants were comfortable with those present and understood their role in the meeting.  Dr Bishop explained that we hold patient participation group meetings on a quarterly basis inviting selected groups of patients with particular needs or conditions to discuss how we are doing at meeting their needs, the experiences they have encountered and how we might improve our services by asking them for feedback. Phil and Linda, Senior Learning Disability Primary Care Liaison Nurses, had prepared an easy read agenda to help everyone participate in the discussions.

The following topics were raised for discussion.

Appointment Availability
On discussion it became apparent that it is usually the carer/enabler who will contact the practice on behalf of the patient when an appointment is needed.  They said that on the whole they do not experience any issues in booking appointments, some use on-line booking and find this helpful.  They said the GP’s at the practice are always happy to speak to them on the telephone if they just need advice and that this very helpful as it is not always possible/appropriate to bring the patient to the practice.

When attending the practice both the patients and carers/enablers said they felt the practice was friendly and approachable, from the reception team through to the clinician. 

Sharon said that it would be nice if she was able to check herself into her own appointments rather than going to the desk or asking her carer to do this for her, she felt this would enable her independence.  She is unable to do this herself due to the size of her wheelchair and not being able to get close enough to the checking in monitor.  This was discussed by the group and a possible solution might be to have the monitor on an extendable arm.

Both patients and carers/enablers agreed that it helps greatly when they can see the same clinician.  With having complex medical issues it can become tedious to keep explaining the same problems to different clinicians.  Also the patient gets to know and becomes more comfortable with one clinician.  Dr Bishop agreed that it is also greatly beneficial for the clinician as they get to know the patient and their condition in more detail.

Both patients and carers/enablers said they understand that for acute issues needing prompt input that they may need to see a different clinician, but the practice team said they will endeavour to meet the patients’ needs to see the same clinician if this is possible.

When asked the patients and carers/enablers said they personally did not have any issues with the patient calling system used at the practice.  The practice team explained that some patients have identified issues e.g. blind patients and for these patients the practice will add an alert to the patient’s medical records which indicates to the clinician that they need to be collected from the waiting room.  All felt this was an adequate adjustment to meet the needs of patient who find the calling system difficult. 

When asked the patients and carers/enablers said on the whole they did not have to wait long for their appointments to see their clinician when checked in.  They found the waiting room satisfactory.  Dr Bishop said that if they felt they needed a longer appointment time with the clinician due to their disabilities this can be requested and will be documented on their medical records so that more time is always allocated.

Annual Check Up
Phil shared with the group that Sharon helped with the initial review and implementation of the Learning disabilities annual health checks that are now carried out in GP practices across Devon.

All present said the annual check was a great idea and is appreciated.  They liked that they are invited annually for a full check-up which comprises of an assessment with the HCA followed by a double appointment with their usual GP.  However it was raised that sometimes these appointments can be a little over whelming with lots of information to digest, it was suggested that it might be more helpful in bite size pieces over different days.  After some discussion it was agreed that for some patients the one stop shop is the best option but the GP should assess and discuss with the individual patient  their preferred option, and if needed they should be brought back for a further consultation at a later date.

The group reported that the invitations and questionnaire send by the practice inviting them for their annual review was easy to understand, this has been produced in easy read format.  Linda informed the group there is a push to standardise the language used for people with learning disabilities and they envisaged this being ‘easy read’ symbols. The participants said it was good to receive the health questionnaire before their appointment as this gives them an opportunity to think about the questions and their answer, their care/enabler can also contribute. The practice team felt it was important that all patient on our register are invited and re-invited if they DNA or cancel their appointment, as not all patients understand the importance of this review.  If they continue to decline their review their case will be raised with their usual GP to discuss further action.  In some cases the GP will perform a home visit if this suits the needs of the individual patient.  Dr Bishop attends Westmead to perform the checks for their residence rather them asking them to attend the practice.  Also this year Katey (HCA) attended Westmead with Dr Bishop to perform the necessary blood tests and screening for these patients, this worked well both for the clinician and patient.  

The group then talked about annual screening (AAA/Bowel/Breast/Cervical Screening) and self-checking for patients.  Phil and Linda explained that they are working with many of the screening teams to try and identify patients with learning disabilities who are due for screening recall. They will then contact the patient before they are invited for screening to offer counselling (de-sensitise), advice and encouragement to attend.  The patients present could not remember being recalled for annual screening, presumably because they are not yet due.  There was little awareness about self-checking and the practice team explained that this is important for all patients.  Phil and Linda agreed to spend some time with Stefan at a later date to discuss self-checking.  Beth, Support Worker from Westmead said in-house training for the staff at Westmead might be beneficial, this would help them aid patients at the home and understand the importance.  This is something that Phil and Linda will try to explore with Westmead

Access
The group discussed access in and around the practice.  Sharon raised that some of the doorways can be difficult to navigate in such a large wheelchair.  The main doors in and out of the practice do have a second smaller side which can be opened to make access easier but of course the patient would need to ask for help opening these doors.  We discussed that the reception staff are always happy to help patients with access issues but they need to be mindful of the individual as not all patients want to ask for help or even accept the help being offered.  It was agreed that the practice team would discuss this with the receptionist at a team meeting and suggest that patients with access or mobility difficulties are offered help but they need to be respectful that not all patients will accept help as they wish to do things independently.  It was also suggested that a bell might be installed which patients that want help could ring to alert the receptionist.   

When asked by Phil and Linda, Sharon said that she would be more than happy to attend the practice with them to help assess accessibility in the practice.  Sharon said the main issue for her doing this would be the time for her support worker to attend with her as her funded carer/support hours have been reduced.  Phil said he hoped that they might be able to fund carer time for Sharon to come to the practice to undertake this role.  Sharon said she is always looking for ways to keep her mind active and liked to do anything that would help others.  Phil and Linda will liaise with Sharon and Westmead to try and implement this happening.  In turn Julie will supply dates and times when it is quieter at the practice to aid this review.  This will help towards the practice achieving Learning Disabilities Friendly GP Practice Status.  Stefan was less keen to become involved but said he would think about it.

Sharon also agreed to work with Linda as an Easy Read Checker.  They will follow this up after today’s meeting. 

Support Groups/Clubs
The practice team shared that some of the patients invited today had been unable to attend as they were already busy attending local clubs.

Sharon explained that she is currently working with a team at Westmead to plan activities and group sessions at the home and they hope to open these sessions to non-residents.  The practice team said they would be more than happy to help promote these sessions to other patients attending the practice who have learning disabilities.

Phil and Linda shared with the group a number of clubs locally that might be of interest e.g. Vibe in Barnstaple and Gateway Club.  Stefan’s Mum raised that many of the groups they had investigated for Stefan were based too far away mostly in Bideford, she is keen for Stefan to interact with people his own age more but this has been an issue for them.  Phil explained that there are options open to Stefan and that they would contact Stefan and his Mum after today’s meeting to discuss this further.

Learning Disabilities Friendly GP Practice Status
Phil explained to the group that Caen Medical Centre is trying to achieve Learning Disabilities Friendly GP Practice Status and to do this the practice has to produce evidence for a number of markers to demonstrate that it is achieving best care for its patients with learning disabilities.  The team at Caen medical centre has already been working towards achieving these markers and today’s meeting will help demonstrate that we are engaging with this cohort of patients with an aim to improving the service offered.  

The participants at today’s meeting indicated that they were happy to help the practice work towards and hopefully achieve this status.  One raised that holding today’s meeting to discuss and consider the needs of this group of patients was a great start.

It was suggested that it might be good to arrange a further meeting in 12 months’ time, this would give us an opportunity to review progress made by the practice and to ensure that the practice continues to communicate with this cohort of patients.  The participants at today’s meeting said they would be happy to attend future meetings.  They said it would be useful to have an agenda ahead of the meeting so that they could consider the areas of discussion and prepare.

The practice also raised that it might consider approaching Westmead Home to see if this meeting could be held there as this might enable more of their residents to attend and the adapted building would be able to accommodate the needs of the participants.

Outcome/Changes Suggested
•	Practice to consider mounting checking in monitor on an extendable arm so patients in large wheelchairs can be independant and check themselves in.
•	Practice to book patients with Learning disabilities with the same clinician whenever possible.
•	GP to consider booking follow up appointments at Annual review if required by individual patient.
•	Senior Learning Disability Primary Care Liaison Nurse to explore with Westmead the possibility of provide in-house training on self-checking for patients
•	Raise awareness with reception team to offer help/assistance to patients with access or mobility difficulties being respectful that not all patients will accept help as they wish to do things independently.  
•	Practice to consider installing a bell which patients wanting assistance could ring to alert the receptionist
•	Practice team and Senior Learning Disability Primary Care Liaison Nurse to spend time with users of the practice to look at accessibility
•	Practice to help promote local groups/clubs for patients with Learning Difficulties.
•	Further meeting with patients with Learning Disabilities to be arrange for 12 months – agenda to be issued in advance/consider holding this meeting at Westmead
•	Practice to aim towards achieving Learning Disabilities Friendly GP Practice Status

Summary/ Discussion
The practice team along with the Learning Disability Primary Care Liaison Nurses felt the meeting had been extremely productive and thanked the participants for taking the time to attend and their valued input. 

On the whole it was felt that Caen was doing OK at understanding the needs of our patients with learning disabilities and was providing a positive caring environment, however there is always room for improvement.  This is something the practice will work toward, and hopes to achieve Learning Disabilities Friendly GP Practice Status.  

The Learning Disability Primary Care Liaison Nurses (Phil and Linda) feel strongly that the theraputic relationship between patients with learning disabilities and their clinicians is important to ensure the individual is receiving the best care, they felt the team at Caen were aware of this and trying to achieve continuity of care whenever possible. 

The patients and their carers/enablers also gave positive feedback about the meeting and had appreciated being asked for their opinion and input.  They said they would be happy to help the practice improve the care they offer and would be happy to attend future meetings.