Personalized Care Group - NHS Education - Week 4 - December 5, 2020

Personalized Care for people with Complex health needs

What does personalised care look like for people with an on-going physical or mental health condition? https://www.longtermplan.nhs.uk/

Video: What is supported self-management?

Supported self-management (also called SSM for short) happens when people with long-term health conditions are supported to develop the knowledge, skills, confidence and support they need to manage their conditions effectively and in the context of their everyday life. Ultimately, it is about empowering people to have choice and control over their personal care planning.

There are four main parts to supported self-management:

1. Patient Activation Measure (PAM)

Sometimes your GP or healthcare professional uses a questionnaire (as a tool) to find out what you already know about your health condition and how confident you are to manage it.

The Patient Activation Measure gives you a score which places you at one of four levels. People at level one, describe having little knowledge and confidence to manage their condition on a day to day basis and often feel overwhelmed. People at level four have the most knowledge, skills and confidence. Knowing how you feel about managing your health condition, helps health and care professionals to personalise your services which can make a huge difference to you.

2. Health Coaching

Health coaching is a one to one conversation with a health coach. Health coaches are trained professionals who are there to inspire, guide and motivate you to make positive health choices.

The health coach will listen to you and help you address your health issues by helping you identify, and then work towards, some health goals. It’s important to remember, that these should be your health goals and should reflect any behaviour or lifestyle changes you have decided to make. 

3. Self-Management Education

Self-management education can be any form of education or training for people with long-term conditions. It’s another way to help you develop more knowledge, skills and confidence to manage your health condition more effectively. 

4. Peer Support

There are different types of peer support, but they all bring people together with shared experiences to support each other. The aim is to provide a space where you feel accepted and understood and where everyone’s experiences are equally important. 

What is personalised care and support planning?

Personalised care and support planning (sometimes called PCSP) involves a series of conversations about the health care and support you need to live well if you have a long-term physical or mental health condition.

What benefits can you see to having a good personalised care and support plan? I want to stay in control of as much of my life as possible, but I can't do that unless I know all that is available to me. Having a good, detailed plan will help me stay aware of what I need to do to help myself become better.

Article: What is a Personal Health Budget?

‘A personal health budget is an amount of money to support a person’s identified health and wellbeing needs, planned and agreed between the person and their local NHS team.’

A personal health budget can be managed in three ways, or a combination of them:

1. Notional budget. The money stays with the NHS. Y

2. Budget held by a ’third party’. 

3. Direct payment for healthcare. 

Video: A personal health budget in practice.

Video: What is good personalized care?

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.

Virtual Patient Day - October 16, 2020

I enrolled myself in the American Endometriosis Association's Virtual Patient Day so I can learn how to own and manage what I have.

I'm free to be me with my quiet smile and my eyes filled with deep wonder for life. I decided to partake in #endofound's Annual Patient Day this year to help myself. I have endometriosis and I'm learning to not only accept it, but I am also learning about the disease itself so I can help myself have a better quality of life. I wrote this for a contest that's part of the seminar!

While I was listening to the seminar, I was chatting with my mother on Facebook and she told me that my periods when I was younger were sometimes painful. She also said my periods were also sometimes heavy, which I vaguely remember. I have a memory of being in Ottawa for Show Choir in 2005 and going shopping at a mall for a grad dress when I got my period. I flew home to Alberta while on a period and it was heavy. I remember wearing black pants and excessive pads just to hide it. My mom told me that our doctor at the time always thought she was overdramatic when it came to my need for medical attention because of my neurodivergency. If I hadn't made an appointment with another doctor back in 2017 and demanded a referral, I would still be in the dark today.

Note: Sugar and carbs that can convert into sugar can be inflammatory. YIKES.

Notes from keynote speaker Lexie Stevenson:

-Would an internal ultrasound help? I've had pain and bleeding lately that makes me wonder...

-omg, endometriosis grows back worse?

-depression and anxiety can be a result of having endometriosis. I was having really bad pain attacks when I annoyed the hell out of people in a social club I am part of and that pain might explain why I did it. I didn't feel like myself during those moments and now I know why. Damn endo.

-Whatever causes inflammation in your body in terms of food, go without it for a week and see how you feel. It might mean having to give up candy bars (cries). I have already given up oats/cheerios, honey, peanut butter, cinnamon, huge amounts of lettuce, spicy food, pop tarts, dairy, onions, and other bad food habits. This does work, as I have tried it.

-Give yourself a before bedtime routine and WORK OUT to help yourself with mental health stress.

-Advocating: find silver lining in everything, learn that hysterectomies don't cure endo and they are not worth it, learn to tell the doctor that there is something wrong and they need to figure it out, passive communication doesn't work; you MUST use assertive communication when talking to doctors. 

I made a list of things to bring up to my doctor the next time I see her because with the new information and what I am learning here are helping me to put things together in my head. 

Dr. Haas

-having a trust relationship with a doctor.

-it's normal to feel scared, embarrassed, anxious, tearful.

-trust that openness and honesty are part of communication with your doctor.

-trust gut intuitions.

-don't be afraid to admit pain.

-think about this: what has endometriosis done to affect your quality of life?

-write down what endometriosis has taken from you and what you cannot do because of it.

-tracking your symptoms: keep note of where pain is, how long it is, etc.

-organize, gather relevant records, and bring your stuff to doctor.

-recognize abnormal symptoms as being something worth paying attention to.

-girls and women with endo learn to take on a lot of pain = quiet suffering.

-help trained physicians not minimize women's symptoms.

-diminish bias, push through it.

-destigmatize our symptoms.

-Lupron makes people loopy, angry, etc. 

Questions

Virtual Intake Appointment - October 15, 2020

I had my appointment with the pain clinic in a city three hours away from my house, but it was done over Zoom because the actual clinic is sharing space with a COVID call center right now and there's not always going to be room for appointments. One of the things the nurse started out by saying was that Dr. Topping wasn't entirely sure it was endometriosis, but that the diagnosis became sure when she found endo inside of me via surgery. Also the fact that the current two medications I am on are working and helping me be able to function is another reason why everyone believes it is endometriosis. The nurse explained about what the treatment through the clinic would involve and I agreed to it. I would start by taking two courses via the phone and then go up to the bigger city for the physical assessment after those were done...

Creating a legacy - September 30, 2020

I take a religious class for middle-aged singles on a weekly basis and this set of lessons is geared towards a book authored by Moses in a publication called the Pearl of Great Price. Tonight, the class touched upon the creation of the Earth. In discussing the Creation, we touched upon the terms "multiply and replenish the earth" and I used to think that meant simply having children. Because of my condition, that may prove difficult, if not impossible. I cried because every time something comes up that reminds me of my circumstances, I cry and I make myself remember that there is more to a woman than having children. 

During the lesson, I learned some interesting Hebrew terms about multiplying and replenishing the earth.

Rabah: multiply

Parah: fruitful

Male (pronounced may-lay): replenish (to fill/be full)

I also reasoned to the others in my class that one doesn't necessarily have to bear children in order to replenish the Earth. There are many children born to the Earth who need positive influences in their lives because they don't have them. These children need people who have lots of love to give and a passion for providing a positive example that can be followed. Children and youth need positive examples desperately and those who cannot bear children for whatever reason have the opportunity to fit that role and so they should seek to. Men and women were both counselled to have dominion over the Earth; in other words, they were counseled by God to take responsibility for themselves and each other. Taking responsibility for each other involves serving as mentors to those who lack them and need them.

The whole thought of 'creation' is interesting because so many can create so much and even if someone can't create a specific thing that is expected of them, they are perfectly capable of creating other beautiful things and should be encouraged in doing what they are able. One must find joy in what they CAN create and have pride in what they can give. People should also avoid being ashamed of what they cannot create, as those limits in their abilities are not their fault; it is what life has given them to deal with and dwelling on the negative will only waste time and energy that could be used to create other types of masterpieces that will serve as a legacy to generations to come. Even if you do not think what you can give will ever be enough because it's not what is expected of you as a woman, what you can give will be enough for someone...enough to keep them going and sustain them away from dark thoughts that often come with difficult circumstances. A legacy doesn't necessarily have to involve bearing children; it can involve being a positive influence on the lives of others through persistent use of work, care, talents, love, and time.

My endometriosis is REAL, but it's thankfully young - September 30, 2020

I phoned the clinic a few days ago in hopes of learning more about my endometriosis and what stage it's at because I learned through research that there are actually 4 stages, with Stage 4 being the worst. Dr. Topping sent me a message via the nurse: I have Stage 1 endometriosis. I am cautiously optimistic that it will not get worse, but it very well could and that will mean more action. 

THE REFERRAL TO THE PAIN CLINIC WENT THROUGH! JOYFUL DAY! - September 28, 2020

I finally got a call from the pain clinic in Calgary and the referral finally went through! The lady on the phone said that the first step will be an intake interview over Zoom on October 15th with a nurse to see where I am and we'll decide what steps to take after that. The meeting, she said, cannot be in person because the clinic is currently sharing space with a COVID call center and space is limited. The person on the phone was also sympathetic to the hell I've been going through and is happy that I will now be getting the help I need. Living with a chronic illness sucks, especially during a pandemic.

Switching to Monthly Treatment! - September 11, 2020

When I went to the clinic today, I called in and said I was having a bad pain day, which was very true, and they let me come in. I got to sit in a soft chair til it was time to get the shot. When I saw the doctor, I asked about switching to another medication cause pain was horrible, but she wants to keep me on the current medication right now and it will now be a monthly treatment because the three month treatment is not available. She also promised, after I asked, to look into where my referral to the pain clinic in Calgary went, as they are apparently open now. I also got a few pictures of my visit this time:

Adjustment - September 1, 2020

11:15 A.M.: I just got off the phone with the pharmacy...they just told me something dreadful.

The perscription shot I usually get every 3 months is now not available (out of stock or something) and so they had to switch me to one that I have to get monthly. Men plan and God laughs.

Spring/Summer 2020 - Medical Care in the time of COVID-19

June 19, 2020: I had a depo shot and it was really staggering even going to the clinic because COVID was in full swing, things were closed, and fear was running very high. When I got to the clinic, I had to call and say that I had arrived. The nurses would then prep a room for me and call me when it was time to go inside and I had to wear a mask. All in all, it took an hour to get inside and another half an hour to get the shot. By the time I was all done, I was ready to be out of there.

August 6, 2020: I went to the clinic again and went through the same procedure as before to get inside, but it thankfully only took half an hour to get in and 10-15 minutes to get seen. Dr. Topping and I talked briefly and I admitted that there was pain, but minimal bleeding and the menopausal symptoms from the meds were bad. She gave me a sample of a patch designed to ease symptoms and will give me an official perscription if it takes. I also got a perscription for another depo and she's suggesting I try other medications down the road. My next appointment is September 11 and it's at the hospital outpatient place, which is a GODAWFUL way to be spending that day, but it is what it is and there's nothing I can do about it. My mom, who is in town cause my papa had day surgery and took me to the appointment, suggested I get a blessing while I am out visiting them. This endometriosis is so hard on me emotionally and as I get older, I hope that there will be a man out there who can handle all of this and love me as I am...messy and malfunctioning.

Current state of things - March 20, 2020

I am now on three medications: an IUD, a depo shot, and pills to lessen the artificial menopause symptoms that the depo shot creates. I also have a waiting referral to a pain clinic in Calgary. I have been doing this since December and it helps sometimes, but not all the time.