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Showing posts with label newsletter. Show all posts
Tuesday, 4 October 2016
Dove House - October Newsletter
Tuesday, 16 August 2016
Legal Side of Head and Neck Cancer
Legal Side of Head and Neck Cancer
As our aim is to advocate for better outcomes and treatment for head and neck cancer people, understanding the legislative environment for the provision of services and funding is crucial. This is all legal, as it is the government policy through law, that determines the services head and neck patients receive.
The Key Pieces in the Jigsaw
The Health Act 1956
This is older than me! The Health Act is the foundation of the New Zealand health system. The Health Act delegates responsibility to the Ministry of Health. Its states S. 3A. “the Ministry shall have the function of improving, promoting, and protecting public health.” The Act creates Health Districts that are so familiar to us.
New Zealand Public Health and Disability Act 2000
The purpose of this Act is to provide the funding for health services. This includes public health services, and disability support services. Priorities are the principles of improvement, promotion and protection of health. The Act includes the ideas of promoting of inclusion and participation in society. A key priority is the independence of people with disabilities.
The Act states as an aim, the best care or support for those in need of services. It includes provisions to reduce differences in health outcomes for Maori. It ensures there is public participation in personal, public and disability health services. There are responsibilities given to the Ministry of Health. The Ministry is to facilitate access to, and dissemination of, information to deliver, appropriate, effective, and timely health services.
The Act sets out the objectives of the District Health Boards. These are to reduce health outcome disparities between various population groups within New Zealand. The Boards are responsible for developing and implementing, services and programmes. These services and programmes are to raise New Zealanders health outcomes. The Boards have the responsibility to promote effective care or support for those in need of personal health services or disability support services.
DHB’s are required to collaborate with relevant organisations to plan and coordinate at local, regional, and national levels for the most effective and efficient delivery of health services. They do this so they can improve, promote, and protect the health of people. As a consumer organisation we have a legitimate role in working with the DHB's. Our role is to advocate for an improvement in services provided to head and neck cancer people.
Standards of Service Provision for Head and Neck Cancer in New Zealand
One of the programmes of the Ministry of Health is the development of standards of care for each type of cancer. In 2013, a working group of skilled and interested stakeholders developed the Standards of Service Provision for Head and Neck Cancer. These Standards ensure timely cancer treatment. They are part of the Ministry of Health’s Faster Cancer Treatment (FCT) programme. You can access all the Standards of Service Provision here. http://www.health.govt.nz/node/5073
All national standards follow an agreed pattern. The standards topics include prevention, early investigation and treatment of head and neck cancer. Each standard states a goal, and specifies processes to achieve it. The standard includes a rationale and a method of measuring progress. Each standard has good practice points.
How does this work in practice?
One of our issues is dental care and dental reconstruction. Standard Nine states patients have access to a care coordinator. This includes access to a range of rehabilitation professionals throughout their cancer journey. General Practitioners are part of the coordinated care.
The rationale states that patients are a varied, heterogeneous group, with potentially complex and long term needs.
The best practice points guide clinicians to meet the standard. For Standard Nine, the best practice points state that on discharge from hospital, patients receive appropriate oral care. This includes advice on the need for regular, ongoing professional care. It includes future oral care, as well as what you need to do if you have a prosthesis. It states patients will receive advice on their individual circumstances and needs. This includes dental extractions. Other health professionals, such as your GP and dentist should be informed of your oral and prosthesis care needs.
For best practice, patients should return to their own dentist for continuing care. If you cannot afford your own dental care, and the finance and facilities are available, you can receive oral care and maxillofacial rehabilitation. Yet, it appears that ideally you pay for this. It is not publicly funded.
A comparison with breast cancer
Breast cancer is one of the most prevalent cancers. The groups that represent breast cancer people are many. There are over 32 in New Zealand and they are vocal. They advocate for breast cancer people to have the best quality treatment and rehabilitation. There are National Standards of Service for Breast Cancer.
Here is the Standard for breast reconstruction.
Standard 8.6 Clinicians discuss delayed and immediate breast reconstruction with all women who undergo mastectomy, and offer it except where significant comorbidity precludes it. All appropriate reconstruction options are offered and discussed with women, irrespective of whether they are available locally.
The rationale for this standard is lengthy and I will not recount all here. The first paragraph sets the tone. “Breast reconstruction is an important means of enhancing body image and self confidence after mastectomy ...”
The good practice points are extensive, and include a process for women to seek further assistance if they are unhappy with their reconstruction. All of this is publicly funded.
Head and neck cancer folk talk about their dissatisfaction with their own situation. Many are dissatisfied with the quality ongoing care. Some are concerned about their access to rehabilitation. My response is to affirm to you the need to support your own organisation. It is through the Network we can provide you with the voice to be heard. Together we can advocate for better outcomes for head and neck people.
You can support us with your time, donations, participation in projects, and by connecting with others. As you can see we have much work to do. Diana
Find us on Givealittle
We have started to fundraise! Givealittle is up and running and already attracting a trickle of donations. You can find it at the link below:
Our fundraising supports our publications, posters, flyers and website subscription.
Thursday, 11 August 2016
Support Network Newsletter Volume1, No. 9 August 4, 2016
We had two excellent talks this month. As you will see below, Carlene and Vicki like consumer input. If you wish to contribute to the ongoing discussion about improving health care, please email us and we will pass it on. To read the full newsletter click here.
Vicki Thomson: the Multidisciplinary Meeting
They’re the bane of our lives, terrifying and overwhelming and Vicki was here to explain why multidisciplinary meetings are the way they are.
She explained why they struggle to change them.
An MDM is used for many illnesses but it’s unusual to have patients attending. HNC patients attend these meetings because their cancers are visible and doctors gain by seeing the cancers in the flesh.
Who attends the MDM in Auckland?
The meetings are attended by patients and medical people from the four DHBs in our region: Northland. Counties Manukau, Waitemata and Auckland.
They can get referrals from other regions like Hawke's Bay or Waikato.
Private consultants also refer because most HNC cases should be discussed at an MDM.
The team at Auckland contains many different specialists.
If you're from out of town you might see the anaesthetist later in the day. A team of anesthetists come over to see to up to four patients.
Time to prepare
A radiologist looks at all imaging sent in again, even if has been looked at locally. A pathologist looks at all the slides obtained. (Some are even sent over from Rarotonga.) It’s reassuring to think that diagnosis does not depend on ONE person's knowledge. 
As well as the medical team, there is a large clerical team. The MDM coordinator would take 30 plus hours to arrange one meeting. For example asking for pathology slides takes work from clerical people in two locations. Posting or couriering these slides can take days. They need the physical slides on site well beforehand. It takes a week to get ready for a MDM.
Number of cases
Seven to 8 years ago there was no limit but now they can’t cope with the sheer numbers.
They can see only 10 cases from 8 am to 12 pm. Doctors have other responsibilities and have to move on.
As well as the ten patients they see, other patients’ routine 6-monthly scans and other issues are also discussed. They could discuss 30 - 40 extra people, as well as the ten who are seen.
Format
Patients get there at 8 am. Doctors start at 7.45 after their ward rounds or travel. Some patients arrive very distressed. Nurses sort out distress, smoking cessation, get a dietician to see them, organise pain control. Staggering patients’ appointments was tried but didn’t work.
When patients go into the room, they are confronted with about 15 faces looking at them. It’s very hard on patients, but one examination is now conducted that everyone can see and doctors can give feedback very quickly.
There is a booklet for patients. Esther will add our information to the back of the book.
Medical information continues to be an issue. Some people don't read the medical information. How much do we give and when? What format? It’s the same with information sheets on big surgeries. The other problem is that no two surgeries are the same.
When electronic health records are in place, Vicki believes that the delivery of patient information will get better. It will also be easier to care for patients when they can see records from Northland etc faster.
Surveillance Mode
There is a new initiative. After the first two years, the nurse specialists, Malveena, Felix and Vicki, will see patients during their clinic visits. They have to get smarter. They now have more patients and not enough doctors. 
Patients don’t like the endoscope procedure. Vicki said in general they try to spray people earlier so the anesthetic works. They spray people before the MDM and in the ward they are training house surgeons to go around and spray people before the doctors come.
National Collaboration
Over the last 15 years since the introduction of DHBs in 2001, each area has done its own thing. Now there is a movement towards a more global approach with the MoH providing National Standards. There is now a time frame from government. For example, after seeing your GP with a cancer, you should be seen by a specialist within 14 days. After the decision to treat, only 31 days should elapse.
Educating GPs
Sometimes they do not raise enough of a red flag. For example, writing “has had sore throat for 2 weeks” is not enough info. If you don’t trust your GP, change your GP. Once again, electronic health records and perhaps visual images will help.
Contact person at hospital
One patient raised the question of who to ring when someone is in surgery all day. Vicki said,
“In all circumstances the best person to contact is your nurse care coordinator- the number will be provided to you as you are treated. If not please feel free to ask. Most time the nurse is able to access in some way or another, the doctor in surgery if needed urgently. Otherwise they will discuss the issue with the relevant doctor probably the next morning.”
MJ.
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