Patient & Public Involvement (PPI)

  

  

NEWS

Patient and Public Representative

We are pleased to welcome Glenys Marriott to our Operational Delivery Network (ODN) Board as our Patient and Public Representative. Glenys has a wealth of experience and will be a valuable voice for our service users in helping drive improvements across the service. 

Read more from Glenys about her role below!

Get

Involved

The Network is committed to working and engaging with patients, carers and the public.  Ensuring that people’s views are heard is important to us for creating and delivering better critical care services. Why not get involved in the following ways:

  1.      See what other surveys and consultations NHS England is             running at the moment

  2.       Over the next few months the Network will be developing              various approaches to ensure that people’s input can be              sought, heard and acted on. We are determined to ensure          that people’s voices are at the heart of transforming                    services.

  3.       Contact us directly with your views and feedback

All NHS organisations are tasked with involving users of the services to inform change in order that patients and the public can be defined as being active participants in treatment, with the opportunity to make choices and be involved in the modernisation of services. The Network recognises the challenges facing our particular patient group but aims to ensure that PPI becomes a key activity, one which healthcare professionals and commissioners view as a powerful means by which our services will be improved in order to meet the needs of our local population.

 

The input from patients, carers and users is therefore essential to create the user led healthcare system we aspire to. Patient and public involvement also assists in the scrutiny of services through representing people’s views, and provides them with a route to assuring the quality of the services they use.

 

If you would like to share your experiences of critical care services or know more about the friendly and welcoming support groups available across the Lancashire and South Cumbria area, then please contact us. We’d be happy to hear your views about the care received or areas you think could be made better.

Patient Support

There are many other sites that can provide information to support patients and relatives. below are just two of those. Click on the pictures below to be directed to their websites!

Our Pledge
The Network continues in its attempts to engage with past critically ill patients, their families and friends. We are keen to seek their views on what matters to them and what we can do better.

We have been pleased with the response to attend our High Tea Events to date, and have had the opportunity to hear the experiences patients and families had whilst in critical care and following discharge from hospital. The Network recognises the value of these events and is planning more of these over the year; see the our HOME page for details!

Patient Stories

Work has been underway to determine the experiences of patients suffering from delirium. Through the engagement of past patients sharing their personal accounts of their critical care stay and the impact on their physical and psychological well-being, video clips have been produced and can be viewed by clicking on the videos below.

Alan's Story

Fiona's Story

Local Support Group Dates 2017

Royal Preston Hospital

Saturday 22nd April                       1100 – 1230 hours

Saturday 20th May:                       1100 – 1230 hours

Saturday 1st July                           1100 – 1230 hours

Saturday 26th August:                  1100 – 1230 hours

Venue:

The Restaurant in Health Academy Centre 1 at the Royal Preston Hospital

Parking will be free on the night and you will need to press the intercom button to access the barriered car park located opposite car park H. 

 

Lancashire Teaching Hospitals: Critical Care Patient & Relatives Support Group.

I am a sister in the critical care unit at LTHTr with particular interest in the impact that a period of critical illness may have on patients and relatives long after they have been discharged from the unit and hospital.

 At the moment the unit provides a follow up service for patients that have been with us for 4 days or more on the unit whether they have been a level 2 (HDU) or level 3 (ICU) patient.  They are consultant supervised and have senior nurse and psychology input.  At these appointments which should be at 8 -12 weeks post discharge from the unit we screen for Post-Traumatic Stress Disorder and any physical problems that have been caused by a stay in the unit not directly related to their reason for admission.

 Despite our best efforts patients may suffer from problems related to:

  • Physical morbidity: problems such as muscle loss, muscle weakness, musculoskeletal problems including contractures, respiratory problems, sensory problems, pain, and swallowing and communication problems.
  • Non-physical morbidity: psychological, emotional and psychiatric problems, and cognitive dysfunction.

These problems affect recovery not just physical but also impact on relationships, financial and employment prospects and often those that have had a critical illness may feel they are alone and that their situation is unique to them but we have found this is not the case.

 

Therefore when a letter of enquiry landed in my mail tray in March 2013, I wanted to know more. It was from Helen Willott a previous patient of our critical care unit.  Her experiences in the unit have motivated her to set up this support group.  At this time she was 5 years on from her admission and although considered herself recovered physically she suffered from PTSD.  She wanted her experiences to help others that have been in a similar situation. 

 

I contacted Helen and we met to discuss possibilities.  We met on the CrCU in the April, however this in itself was difficult for Helen as she had not been back to the unit since her admission and I could see it had an effect on her.  Therefore future meetings were in the M and S café at Deepdale!  Prior to our meeting I looked at what was available already out there.  ICU Steps is a charity that offers a similar service, well established since 2005 in Milton Keynes, closer ones were in Merseyside but the earliest meeting was in May in MK.  Therefore we travelled to MK on the 16th May and met Peter Gibbs the ex-patient who set up that group and Maureen Peskett my equivalent at MK CrCU.  They advised us on the best way to start and we also attended a meeting.  The venue was perfect, an Age UK facility which they paid a nominal fee.  We were enthused and on the journey home were planning our next steps.  First meeting in September 2013 was our goal.

 

I contacted our Patient and Public Involvement lead to ask for advice and consulted them throughout the process.  That is when I realised it was a huge task.  Who do we invite?  How many years do I go back?  How do I ensure that those I am inviting have not died?  In order to uphold the Data Protection Act Helen could not help me at all she could only take over when the group was up and running with people that had chosen to come and share their information.  It was a long process and 500 plus letters, checks on quadramed I sent out invites in early January 2014 and had a 10% response rate.  We held our first meeting March 2014 and our second in April. 

 

The first meeting was well attended, perhaps too successful.  We held it in the conservatory in Charters restaurant in the evening the interaction we anticipated did happen people sharing their experiences and how they are coping giving and taking advice but numbers stopped people from talking to everybody.  We realised that it would not be for everybody and one session would be enough.  We anticipated peaks and troughs in attendance with people coming for as many times as it requires for them to take something from it.  We even anticipated that sometimes we may have no attendees. 

 

Since its beginnings the venue, day and times have changed by listening to the attendees and what they think will work.  It is now held every 8 weeks, in our education centre refectory, free parking and refreshments and cakes. One of our regulars is a keen baker and supplies us with lovely treats.

 

I want to emphasise that is this Helen’s initiative aided with our support as otherwise it would not have been possible.  At the meetings we don’t want them to be clinically focused.  Staff on the unit are keen to help out and we have just one per group as it is a peer to peer group and not a clinic and we usually end up serving the refreshments whilst the group chats.  However a member of the unit can answer the questions that members of the group have if needed.  Staff volunteer to help and the information they get will be relayed back to the unit staff to improve the care we give. 

 If you have a patient that has been on the CrCU then please mention the group to them and their relatives and direct them to the website.

 For further information contact Elaine Walmsley, Sister, Royal Preston Hospital Critical Care Unit. 

 

A Note from: Glenys Marriott

I’ve spent many years working in both social care and the NHS and on retiring to Cumbria 4 years ago, I was pleased to be appointed to the Strategic Clinical Network (SCN) for neurosciences, to represent patient interests. This work covered Greater Manchester, Lancashire and South Cumbria.

When the SCN workstream ended, I had already been heavily involved in reviewing the rehabilitation pathway for Lancashire and South Cumbria and was delighted that this work was to be carried forward, and I was asked to become a board member for the Major Trauma and Critical Care Networks.


I’ve been impressed at the way in which the networks seek to put patients at the centre of all their work and the way in which I am included in their Board work.  I receive board papers, have access to all key members across the network and am asked for my ideas regularly.


I think it is important to understand the trauma and critical care pathways, and the geographical footprint covered by the networks, which includes both urban and very rural areas.  I get the chance to engage with and understand the crucial issues across network care pathways and to raise the impact they could have on patients and carers.


The Network Board works across boundaries with many stakeholders from numerous organisations and I am always eager to hear from partners about their work and challenges.


Part of my role is to be a critical friend to Board members and provide appropriate challenge to ensure the patients’ needs are central to their work.  I have the opportunity at each board meeting to raise a case regarding patient care which impacts strategically on other organisations. 

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In my first 6 months, I have had the chance to meet lots of people, both patients and front line clinical staff, visit ward areas, A&E services and listen to the Third Sector comments about care across the Network. Before Christmas I spent time in Blackpool with other board members, meeting with several patients who had spent time in critical care, listening to what had worked well for them, and changes they wished to see.  This front-line engagement with patients is vitally important to ensure their voices are heard. Their appreciation at being asked about their experiences was profound and I look forward to further meetings like that.


It has been really rewarding to see progress being made across the Network and I am particularly pleased to see my suggestion of having a free legal service for patients in major trauma services at Preston being supported and hopefully coming to fruition.

 

I make extensive use of Twitter and am happy to connect with you at any of these addresses:-

 @cumpstonarchive (A personal account with over 4,000 followers)

 @headwayscumbria A branch of Headway UK

 @cumbrianeuro The Cumbria Neurological Alliance covering most neuro charities

 


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