Personalized Care Group - NHS Education - Week 3

 *Personalised Care

**How has this model been developed nationally and why are there local variations?

**What is shared decision making?

‘Shared decision making is when health professionals and patients work together. This puts people at the centre of decisions about their treatment and care.’

During shared decision making, it’s important that:

Care and treatment options are fully explored, along with their risks and benefits.

Different choices available to the patient are discussed.

A decision is reached together with a health or social care professional.

Shared decision making is relevant in any non-life-threatening situation where you need to make a decision about your health. 

Can you think of a time when you’ve had a good shared decision-making conversation. What made it different?

It helps me to have a better idea of what rights I have as a patient and how I have an equal right to quality care just like everyone else even though I am a neurodivergent individual.

Video: Shared decision making in practice.

Article: Social perscribing

This is what the appointments in December are all about...that's what will open up for me.

A social prescribing link worker will work with you to consider your wider wellbeing needs. They will give you time to focus on ‘what matters to you’ and take a whole person approach to your health and wellbeing. This can include shared decision making and/or personalised care and support planning (find out more about this in week 4). The link worker then links you into community groups and other services for any practical and emotional support, where it exists in your local area.

Video: What is Social Perscribing?

Example: I am going to be visiting a treatment/diagnostic center next month for my condition and from there, I will be set up with different resources to help me manage my illness better.

Video: Your Legal Right To Choose.

There are six areas where you have a legal right to choose:

Which GP and GP Practice you register with for your care

Where to go for your first outpatient appointment, for both physical and mental health

The right to ask to change your provider (usually a hospital) if you have to wait longer than the national waiting time standards (18 weeks, or 2 weeks to see a Specialist for cancer)

Who carries out your specialist tests when you are referred by your GP

To have a personal health budget if you are eligible

Choice to access treatment in another country.

Thoughts about my rights as a patient: I was surprised to learn that I had so many rights as a patient. I simply thought I had to accept what was and that I didn't have the right to express preferences about who I was treated by or how I was treated. It was not until I got diagnosed with a chronic illness that I came to learn the importance of speaking up for myself and being my own advocate so that I could learn what would work best for me in terms of doctors and treatment. Once I was aware of my rights as a patient, I was able to find my voice and use it to become more aware of my illness, ask the right questions, and have a hand in determining what type of care would be the best for me.

Have you been given a choice?

Here are some useful questions you can use to check that you have been given a choice. It’s worth bearing in mind that not every choice would be appropriate so a bit of common-sense is needed!

Have I discussed the ‘pros’ and ‘con’s’ of different treatment options with my GP/health care professional including whether to have the treatment or not?

Was I offered a choice of where to go for my care or tests?

Did I have the opportunity to choose a suitable alternative hospital? This question applies if the time you would need to wait exceeds your ‘legal right’ to an appointment.

Was information made available to help me make my decisions? If I was given information, was it accessible to me? For example, did it use words I could easily understand?

Was I given sufficient time to consider what was right for me?

Quiz

What experience have you had (if any) of social prescribing, shared decision making or your ‘legal rights to choose’?

I'm actually going through the whole process of shared decision making right now in that I will be going to a diagnostic and treatment centre in a couple of weeks for further examination after being referred there by a specialist.

Monthly update! - November 30, 2020

I was early to the appointment today and got in rather quickly because it wasn't overly busy. The doctor also decided to wait on future shots to see what the pain clinic found. I also got a hold of a copy of my medical records from the office and learned the extent of the endometriosis. I hope they find something at the pain clinic in a couple weeks even if it isn't good. I want to start feeling better.

Personalized Care Group - NHS Education - Week 2

Experience with healthcare as a person with a disability: As an individual with a social/learning disability, I have noticed that doctors have never taken me seriously when it comes to health issues because they think it's me being overdramatic or a hypochondriac. I have always had to fight for what I think I need and be very firm about how I am feeling in order to get any results. 

In January 2019, NHS England published a delivery plan for personalised care. The delivery plan is called Universal Personalised Care: Implementing the comprehensive model

It says:

“Personalised care is one of the five major, practical changes to the NHS that will take place over the next five years, as set out the recently published Long Term Plan. Working closely with partners, the NHS will roll out personalised care to reach 2.5 million people by 2023/24 and then aim to double that again within a decade.

Video: Comprehensive Model of Personalized Care.

Article: What will be different for people?

Article: How will personalised care help reduce health inequalities?

Reducing health inequalities means giving everyone the opportunity to lead a healthy life, no matter where they live or who they are.

Video: Hear how personalised care can help reduce health inequalities.

Video: Anjjie talks about the impact of COVID on people from BAME communities.

Reflecting on preparatory experiences - October 28, 2020

I reflected on my situation with endometriosis and God knows what else tonight and I realized that being involved in my dad's experience with cancer PREPARED ME FOR MY OWN ILLNESS. It was around the time that he got sick that I remember having concerning symptoms and just starting to explore my own health because I was concerned that I might have cancer too. I was put on birth control and ended up focusing all my energies on helping my parents with my dad's cancer. 

When he found out his cancer was terminal, he had just gotten out of a week-long stay in rehab for his alcoholism and they didn't catch the cancer then (or maybe he did and didn't tell). His response was to return to drinking and say, "F**k it, I'm going to die anyway." He drank, he smoked, he mixed booze and pills; he was aggressive and violent and threatened to kill everyone at least once. He emotionally and verbally abused his family and allowed his friends to do the same and fully expected us to put up with it gracefully because he was dying. 

I realized that me being exposed to all of that was not for me to make peace with the man who hated my mere existence simply because I was born disabled; it was for me to learn how not to be when it came to dealing with my own condition. So far, my illness has given me anxiety, pain, tears, and a bit of anger, but I have not resorted to drinking, drugs, wanting to hurt anyone, or verbally abusing others. I am frustrated, however, by my family's reaction to this: my mom doesn't want me to talk about it and has told me I make every conversation involve it and my stepdad has his own things going on. My brother asks my mother about me, but he doesn't wish to talk to me because our dad told him I wasn't worthy of love because I was born disabled. My mom also makes a point of telling me that they cannot afford to and don't want to come with me when I go deal with the treatments. I want to find 'family' or supportive people who actually have the energy, willingness, and capacity to be supportive and help me deal with this. I bought Ancestry DNA for myself as an early birthday present, so maybe that will help me find family who are capable of being supportive.

Like, when I told her that my appointments were scheduled for a week before Christmas, the first thing she said was, "What are we supposed to do about Christmas?" Like, no support whatsoever. I know there isn't a lot of money in the family, but she talked at me as if I were a problem.

A road to greater appointments - October 28, 2020

I just got booked in for a physical assessment and other appointments related to my health condition at a diagnostic and treatment centre in Calgary about a week before Christmas and I had a feeling it would be that soon, but it was still very much unexpected. I know basic information about the issue I currently have, but I still struggle with it and I'm wondering if there's more to it than I originally thought. Please, y'all, can I ask for prayers, thoughts, and well-wishes that I can get everything arranged properly and that they'll be able to figure out the full extent of what is going on with me physically? Even if you don't pray, I would sincerely appreciate just being kept in your thoughts. When I told my mom about these appointments, the first words out of her mouth were, "What are we going to do about Christmas?" Nothing about how sorry she is that I have to deal with this and promising to be there for me; just whining about Christmas and saying that she and my stepdad cannot afford to come to Calgary with me. I am frustrated by my family's reaction to this: my mom doesn't want me to talk about it and has told me I make every conversation involve it and my stepdad has his own things going on. My brother asks my mother about me, but he doesn't wish to talk to me because our dad told him I wasn't worthy of love because I was born disabled. My mom also makes a point of telling me that they cannot afford to and don't want to come with me when I go deal with the treatments. 

PERSONALISED CARE GROUP AT NHS ENGLAND AND NHS IMPROVEMENT - Step One - October 26, 2020

I started this course because I am embarking on more extensive treatment for endometriosis and I wanted to be more aware of what's involved in patient care.

Intro Videos

I watched a video called 'Mitchell's Story' and Learning about Mitchell's story and also learning how his condition affects his family makes me a little more mindful of how to handle my own condition in terms of how I include my family. I currently suffer from endometriosis and am about to go into deeper treatment for it and I've been trying to keep my family included in the decisions, but my mom basically said it comes up in every conversation we have and she's tired of hearing about it. She was the main caregiver for my dad when he was dying of cancer and that was six years ago, so I think that has burned her out in terms of being able and willing to serve as a caregiver anymore. I love her, but I also know I need to be more mindful of how my condition might be reminding her of the past and trauma associated with it.

Video: How does the NHS work in England?

Virtual Patient Day - October 17, 2020

Soothing the Pains of Endometriosis: Mind & Body

Corinne Idzal

-We need to soothe the body. In soothing the body, we reconnect with the body.

-When we think of our body and think of it as our enemy, it makes it worse. We need to know that we have the power to feel a little better or feel a little worse. 

-We can have pain and know we are going to be okay.

-It is understandable to have fear.

-Put breathing exercises and self-conversation into your morning routine.

-You have to train your muscles to contract and relax at the right time.

Follow Your Gut: Endometriosis & Nutrition

Lilia Bolgov

-Give yourself time, space, and kindness.

-Find ways to have physical activity in your life for weight and mental health.

IBS is BS when it is Endometriosis….Culprit in the misdiagnosis, and years of delay.

My mind kind of drifted at this point cause of tiredness...

Endometriosis Advocates: Supporting yourself and others with endo

-The most important thing you can do is advocate for yourself.

-Look yourself in the mirror and say, "You are not crazy."

-To advocate for yourself, you have to believe yourself and trust yourself.

-Don't let people tell you how you feel and what is going on with you.

-Speak up for yourself.

-Reach out to someone, know you are not alone.

-A doctor's ego and accountability is never more important than your health.

How to advocate with your insurance

Latia Lee

-I'm not sure how this applies to me, as I am not in the States.

-Be patient & persistent. Don't let doctors forget about you.

-Advocate for yourself because you deserve treatment.

The Endo Life Cycle: Endo through the ages

-People talking about their histories.

I was personally 9 years old when I started menstruation and it was all confusing to me.

-It can be a great mistake to not talk about endometriosis.

-You're not weak or broken. It's not your fault. Don't feel guilty about the illness. You are still a wonderful person even with chronic pain.

-You are not deficient because you are in pain.

Q&A

Issues associated with endometriosis:

-doctors not recognize the disease

-doctors wanting to not touch the disease

-Glands may go away, but the fibrosis does not go away.

-Endo belly may continue even after excision surgery because not all the endo was removed.