That pressure injury or sore was 7cm deep, it resulted in me being in bed rest for seven months to heal, that was quite a traumatic experience in its own way and I can talk more about that
I think I spend a large proportionate of my time either managing my care situation, or managing the medical situation that I’m in so dealing with appointments, dealing with scheduling appointments, dealing with getting hold of doctors, chasing things up when things don’t happen, all that sort of thing. That I think I consider these days to be my full time job.
I do try to keep it as consistent as I can only because with the number of carers that come through, we do struggle to find continuity of care, we do struggle to find people who are consistent that come back and I think that is again, back to the pressure side of things, that can be a challenge too when you’ve got new people coming in.
The quality of the care varies just depending, I’ve had some very good carers and some of them will have done very minimal care, they will have just come from domiciliary and then gone to a training course in an office and then shipped out there. So I do end up doing a lot of the training if you will myself because everybody’s routines are slightly different.
Interviewer: It sounds like you’re carrying a huge amount on your shoulders, that you’re managing your care package, you’re managing your own health, you’re having to train carers who are coming into you where the knowledge isn’t the standard that you require, on top of running your life like everyone has to do which isn’t straightforward. That’s a huge amount for one person to carry.
It is and I can do that now, if you ask me that in 10 years’ time, I don’t know if that answer would be the same. I don’t know how I’m going to be doing this in 20 years from now, you know?
There’s only so much you can physically you can do yourself, there’s only so much bandwidth that you’re bringing and if you’re in pain, which I am sometimes, that becomes even more difficult because the pain is your focus, it’s not really necessarily the carers, again that’s when mistakes get made because you’re just trying to deal the acute rather than you need to be able to see something, say something, whatever.
So yeah, mental health wise, I think fortunately, I do speak to a therapist, a speaking therapist weekly, that helps me sort of destress in a way or at least get out all the frustrations and whatever that are going on. What I’ve found since I’ve been talking to her and I’ve known her for a while now, is that I would say if we have four monthly conversations, out of those, at least two of those would be spent talking about care and that’s not really where I want it to be. I would like be talking about other things rather than, “this is what’s going on this week because of my care ..”, blah blah blah.
That’s how much of an impact and an influence if you will the care situation has in my particular life. It’s difficult, it is difficult.
After 50 years of service, The North and West Yorkshire ASBAH had their first ever Community Conference. It was held on the 16th of October, at Hollins Hall Hotel, Golf and Country Club in Bradford. This was a day planned especially for people in the Spina Bifida and Hydrocephalus communities to come together and celebrate. There was lots of information on continence care, PIP and DLA form advice, education, and pressure ulcer prevention and cure.
During the first workshop, I joined the PURSUN Group from Leeds, to do a presentation on Pressure Ulcer Prevention and Cure. It was very good to meet Delia Muir and share my experiences on the subject.
Heather Chapman was at the ASBAH Charity conference, talking to wheelchair users about nutritional therapy by Wheely Therapy. Nutritional therapy is the application of nutrition science in the promotion of health, peak performance and individual care.
Nutritional therapy practitioners use a wide range of tools to assess and identify potential nutritional imbalances and understand how these may contribute to an individual’s symptoms and health concerns. This approach allows them to work with individuals to address nutritional balance and help support the body towards maintaining health.
Nutritional therapy is recognised as a complementary medicine. It is relevant both for individuals looking to enhance their health and wellbeing and for those with chronic conditions wishing to work with or ‘consult’ a nutritional therapist in collaboration with other suitably qualified healthcare professionals.
I also learned about SEND. This presentation workshop was about guidance on the special educational needs and disability system for children and young people aged 0 to 25, which started on 1 September 2014. The questionnaire that the presenter gave out, was a very good teaching tool.
Additionally, there were stalls and activities for the children. There were free prizes and charity merchandise on display as well. One of our sponsors, Irwin Mitchell, provided bags with freebies inside too. They also support the SHINE Charity.
Dr. Kate Wildig was the guest speaker who ended the whole conference. North and West Yorkshire ASBAH has a good support group. Use It!
A.R.T is somewhat similar to massage therapy in that a therapist will use their hands to manipulate soft tissues. During A.R.T, however, the patient or the therapist will actively flex and extend different muscle groups during manual therapy. This active motion improves circulation and helps to break down scar tissue. A.R.T can help people with:
Plantar fasciitis
Tennis elbow
Shin splints
Carpal tunnel
Neck pain
Back pain
One study found that A.R.T was helpful for people with neck pain as it improved range of motion and the pressure pain threshold score.
Graston and Astym Therapy
In Traditional Chinese Medicine, there is a therapy called Gua sha, which is where a therapist uses a tool, such as a smooth stone, to scrape the skin. Gua sha improves circulation and helps to break down scar tissue. Many therapists have taken the gua sha concept and applied it to different physical therapy techniques, such as the Graston technique and the Astym technique.
Therapists that follow Graston and Astym protocols use plastic and/or metal tools to rub down soft tissues instead of their hands. If you have deeper areas of scar tissue that can’t be resolved by manual therapy, then these types of tools can be beneficial since the therapist can apply deeper pressure. These tools also come in a variety of shapes, which can help therapists pinpoint difficult-to-reach muscle groups, like the iliopsoas. Lastly, these tools help stimulate new cell growth in soft tissues and help the body resorb scar tissue.
Dry Needling
Dry needling is a therapy where practitioners use thin needles to break up scar tissue and reduce inflammation in trigger points. Trigger points are tight muscle fibers that can form from soft tissue trauma, muscle imbalances, and repetitive motions.
Some people may confuse dry needling with acupuncture treatments. While dry needling looks like acupuncture, Healthline points out some distinct differences.
For example, acupuncture is rooted in T.C.M and is meant to improve energy flow in the body; dry needling’s main focus is on correcting overly tight muscles with scar tissue. If your soft tissue injury has caused muscle spasms, then dry needling may be a good option. Some people’s soft tissue injuries may cause extreme sensitivity to touch, so dry needling may be a better option for these patients instead of A.R.T or Graston/Astym therapy.
I’m glad to know this because I only have a Tissue Viability Nurse and none of these techniques were suggested to me. I intend on trying out these new techniques soon.
Between 2008 and 2010, PPI was limited by the ability to recruit service users. Following the establishment of PURSUN UK in late 2010, involvement activities increased across the programme. Furthermore, the methodology and focus of each work package have guided the nature of involvement.
The Pressure Ulcer Research Service User Network UK (www.pursun.org.uk) has a minimum of two management meetings a year at which a core group of the most active members consider the direction of the network, the terms of reference, recruitment, the website and other network materials. Research involvement opportunities are sent out by way of the mailing list, as they arise. For example invitations to help interpret data, become co-authors or input into the study methods.
All members of PURSUN UK are prepared for involvement through a minimum of one induction meeting with the PPI officer (either in person or by telephone). During this meeting, service users are encouraged to discuss the skills and experience that they bring to the group, as well as any support that they may need.
The value of the Pressure Ulcer Research Service User Network UK to the service users involved
As a PURSUN researcher, I have definitely benefitted from the virtual conferences, Zoom calls and emails about Pressure Ulcer Prevention at Home, pressure relief and an app to help people with general healthcare. I’ll also be joining a focus group and I’ll be partly responsible for creating an app to ‘stop the pressure’. Delia Muir and Holly Schofield take turns leading the Zoom calls. I started my role as a PURSUN researcher in 2020, and I believe that Bermuda needs to be included in the network and the impact that it is making. Maybe I should start a sister branch there.
Wider impact of the Pressure Ulcer Research Service User Network UK
In addition to PPI throughout the programme, PURSUN UK has begun to impact the wider tissue viability and PPI communities. For example, members of PURSUN UK have been invited to speak about their experiences at several events.
Locally, this has included training for tissue viability link nurses, presenting to PURPOSE principal investigators, speaking at the launch of the NIHR Bradford Wound Prevention and Treatment Healthcare Technology Co-operative and working with medical students. Nationally, members have presented at the Tissue Viability Society conference, tissue viability education events and the INVOLVE (a national PPI advisory group) conference.
They have developed an effective model for presenting service users’ experiences in which the PPI officer, interviews a member of PURSUN UK in front of a live audience. This provides an alternative to a traditional presentation for people who do not feel confident presenting personal experiences in that way. This model has received very positive feedback from both audiences and the service users involved. They have found that real-life stories are extremely powerful and can create a common focus for professionals from a variety of backgrounds.
Collaboration with industry
Medical devices also play an important role in pressure ulcer prevention and treatment. With this in mind, PURSUN UK has collaborated with industry partners on projects such as education days and product development workshops. This collaboration has helped to diversify the involvement opportunities offered to PURSUN UK members and has been useful in terms of members’ personal development, as it has given people an insight into another aspect of tissue viability research. This work has also generated some funds for PURSUN UK, moving the network towards a sustainable model post PURPOSE.
Developing and sharing patient and public involvement methods
the use of role play and video to facilitate PPI in the interpretation of data from the severe pressure ulcer study
the adaptation of the Patient Learning Journey model for use in a research context
the use of a live interview model as an alternative to traditional presentations
the addition of a service user group to the consensus methodology used in the risk assessment study
individualised support for steering committee members, including one-to-one debriefs with the PPI officer
the integration of service user narratives into the dissemination of the quantitative pain studies.
Further developments include a completely new service user network, which has given them the opportunity to be creative in their approach and develop innovative involvement models. These models have been shared with the UK PPI community. The PPI model used as part of the severe pressure ulcer study, has been presented at three national conferences (Involving People Wales and Tissue Viability Society) and forms part of an INVOLVE video resource on PPI in data interpretation and analysis [see www.invo.org.uk/resource-centre/conference/involve-conference-gallery/ (accessed 20 February 2015)].
A video about the Severe Pressure Ulcer PPI event was also made by PURSUN UK and has been widely disseminated online [see https://youtu.be/bgg6zkbILrg (accessed 21st July 2015)]. The novel approach of using the Patient Learning Journey as a model for service users contributing to research rather than health education has also been included as a case study in the INVOLVE training and development guidelines [see www.invo.org.uk/training-case-study-13-2/ (accessed 20 February 2015)].
I learned alot at this year’s Healthcare UK Conference. It started at 10:00 with the Chair’s Welcome and Introduction. Then at 10:20, I learned about The New National Pressure Ulcer Surveillance System. At 11:00, they discussed Supporting Learning with frontline staff in pressure ulcer prevention. By 11:30, I had a Comfort Break and Virtual Networking. By 11:45, I was learning about Pressure Ulcer Assessment, Reporting & Management. At 12:15, there was a presentation about Case studies in Small Breakout Groups. During the 12:35 session, I was Addressing Diversity in Pressure Ulcer Prevention.
At midday by 13:00, I had a Lunch Break and Virtual Networking. Again, at 15:30, I had another Comfort Break and Virtual Networking. At 15:45, I learned about Nutritional Assessment and Pressure Ulcers. And to end the conference at 16:15, there were Question and answers. This included a survey to grade each session.
National Institute for Health and Care Excellence (NICE)- They provide national guidance and advice to improve health and social care. https://www.nice.org.uk/.
National Wound Care Strategy Programme- The National Wound Care Strategy programme (NWCSP) seeks to improve care for people with wounds. http://www.nationalwoundcarestrategy.net.
Model Health System- The Model Health System is a data-driven improvement tool that supports health and care systems to improve patient outcomes and population health. It provides benchmarked insights across the quality of care, productivity and organisational culture to identify opportunities for improvement. The Model Health System incorporates the Model Hospital, which provides hospital provider-level benchmarking. Access to the Model Health System is currently available for all NHS commissioners and providers in England. http://www.model.nhs.uk
My Improvement Network are committed to investing in education for health care professionals and are proud supporters of RCN Projects. http://myimprovementnetwork.com.
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