Goals and Planning 
for Better Medical Support 
Systems and Services
(A personal view)

The following need to be addressed, within the health system, in order to bring 
about necessary improvement for the cancer patient and particularly the adolescent/young adult cancer patient.

1.The development of medical support services for the adolescent/young adult patient group 

2. Examples of a planned approach within my area of interest is demonstrated in the plan below which outlines a way of bridging the gap within the Health Sector where currently the adolescent/young adult patient group are neglected. 
It is important that we:

(a) Create an awareness of this deficiency

(b) Build appropriate courses here in NZ to gain the necessary expertise, knowledge, skill and understanding within the medical personnel caring for this patient group. Also, complete the fund raising required for the Elizabeth Ewing Fund in Adolescent/Youth Health through the University of Auckland School of Medicine Foundation, to promote specialisation in the care of adolescent/young adult patients.

(c) Create policy at government level to help protect the interests and needs of this particularly vulnerable patient group. ie complete the development of the Ministry of Health's Youth Health Strategy and the Ministry of Youth Affairs Youth Development Strategy.

(d) Advocate for youth through non-governmental organisations, NZAAHD. Complete the construction of the NZAAHD webpage for the consolidation of available services and support organisations involved in the needs of the adolescent/young adult person.

(v) Establish Youth Wards to ensure that there are appropriate units to cater to the needs of this patient group. 

3. Examples for which a planned approach is missing:

(a) Medical Specialisation in caring for the Adolescent/Young Adult Patient Group still has to be sought offshore. There are no specialist training programmes in NZ where the psychosocial needs of the adolescent/young adult patient group are addressed to any depth. 

(b) An Academic Head of Adolescent Health, heading a teaching and research unit which focuses on understanding the needs of young people, and be responsible for: 

i. the formulation of appropriate and relevant courses and research here in NZ so that our new doctors will have the skills to appreciate and relate better to this group;
ii. be able to diagnose and refer or recognise and treat young people who are not well; and 
iii. take responsibility of designated adolescent/youth wards 
(NZ has only one medical specialist trained in adolescent care who is currently working in this area of health.)

(c) There is no Youth Health Policy to protect this particularly vulnerable adolescent/young adult patient group. It is essential that policy be created at government level as soon as possible to provide and protect the rights of these patients: 

(i) within the hospital system 
(ii) the wider community, and 
(iii) home based care. 

The implementation of a youth health policy should help to bring about an automatic linkage of the patient to the appropriate support at the pertinent time. This will in turn help the adolescent/young adult patient to: 
- achieve and maintain a sense of independence, 
- a sense of having control over their own lives, 
- freedom of choice, and
- help reduce their feeling of causing added strain on their families. 

Probably, as a consequence of this lack of policy many patients and families still fall into the "no-man's land", which exists between the child services and those of the adult patient. In this most difficult situation the patient and family are invariably left alone to face and cope as best they can with their worst nightmare.

(d) Who is taking responsibility and, who is accountable for the conveying of information to the patient and family? 

When hospital employees, e.g. social workers, overlook or neglect to inform and refer ill patients/families to Work and Income New Zealand (WINZ - was Income Support until recently), for Community Services Cards, disability/sickness benefit or whatever, it is simply brushed off by WINZ as 'tough luck' for the patient for not having made their application at the time of diagnosis. 

Families spend substantially more on medical bills, prescriptions and numerous other extra requirements brought about by their child's illness and can certainly do without the further unnecessary stress, due in this case, to financial matters. The support/benefits were established as an aid to those caught up in this particular crisis so it should be paid out for the duration regardless of the date of application. 

However, the Social Securities Act 1964, states that no retrospective payments are allowed nor any discretionary power by the court is permitted, no matter how deserving the case maybe, in order to make a retrospective payment for a patient. 

At the very least our politicians need to amend the Social Securities Act 1964 to allow discretionary powers, in special circumstances for retrospective payment of benefits in cases where the information was not supplied in the first instance.
In the instance of a patient's rights being denied (i.e. information withheld) the case should be referable to the Health and Disability Commissioner according to 

Right 6: the right to be fully informed.

However, under the Health and Disability Commissioner Act 1994, WINZ are not a health and disability provider. This means there is a break down of communication for patients and families to their entitled assistance. This issue needs urgent discussion and review.
It would appear that the answer to the question posed, is "no one". Surely, it rests ultimately with our Government.

4. A National Cancer Control Strategy can address these issues by firstly acknowledging that there are deficiencies in the system and helping to take the necessary constructive steps to rectify these anomalies by the: 

(a) Education of sufficient specialists in the field of adolescent/young adult medicine and the development of courses here in NZ

(b) Development of a youth health policy for the protection of the adolescent/young adult patient group;

(c) Establishment of clear communication flow between doctors, social workers, etc, with patients and their families. All options and information being offered and readily available in accordance with the Health and Disabilities Commissioner Act 1994;

(d) Allocation of an appropriate share of the resources to each of the four major patient groups (i.e. child/adolescent, adolescent/young adult, adult, and geriatric) is essential as all have a right to be catered to; 

(e) Creation of appropriate facilities. The needs of the adolescent/young adult patient group are very different to those of an adult and different again to those of the young child. This patient group very much need to have their own facilities to:

(i) Cater to their particular developmental and psychosocial needs, without reservation, in an environment conducive to a positive mental attitude; and 
(ii) Ensure that they are informed of and initiated into all appropriate medical and financial support systems peculiar to their needs and those of their family; 
(iii) The lobbying of Government by professionals in positions of responsibility to take action where palpable risks exist, e.g. in regard to:

(a) known environmental pollutants which may adversely affect the health of its citizens, and 
(b) ensure careful and responsible monitoring of all food supplies without waiting for definitive proof as to whether or not they are, or are not, harmful to the health of the nation. But act with a level of prudence that any parent would apply for the health and well-being of their own families, particularly when the international experts are so clearly divided on such issues.

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A summary of suggestions on
Medical Support Services and Systems
(A personal view)

The following was formulated after having experienced 'the Health System' as a user. My first hand experience comes as a parent of an adolescent/young adult patient who suffered cancer for three years.
It is my purpose to do whatever it takes in conjunction with organizations with similar aims to help bring about positive improvement in "the System", to assist in the plight of the cancer patient and their families.

Source: the Elizabeth Ewing Report (Nov94 to Sept97), and the summary of points from a letter sent to a hospice.

1. Wards for Adolescents/Young Adult Patients with staff trained in the psychosocial aspects of caring for this patient group. 

2. Provision of Support and Back-up for families in the Home Nursing of Patients. All too often one caregiver is working round the clock for days on end. Back-up night nursing must be more readily available and it is imperative that these personnel are knowledgeable, experienced and physically able staff.

3. The Medical Fraternity must Offer Information to Patients and Parents on the Cancer type with appropriate statistics and recommended treatments with drug information and relevant clinical trial information with sources, for example:
(a) The various drugs being used, their side effects on the patient and symptoms to watch etc.
(b) Services available, e.g. who to ask, and where to go for extra nursing help and nursing aids e.g. crutches, commode, bathing equipment, wheel chairs, ramps, etc. (c) Work and Income NZ (WINZ) and what they can offer. 
(d) The Role of the Hospital/Hospice and its Doctors and Nurses

District Nurse.
General Practitioner.
Hospital if the patient is with the Hospice.
Social Worker
Also, consider the limits and expectations of each.

(e) A booklet or similar on basic nursing of the very ill. 

4. Staff to develop an air of hope to go with the absolute honesty and allow time to get to know the Patient.

5. Effective Support Networks for Adolescent/Young Adult patients and their Parents from day one, and for the Siblings, the Grandparents and extended family, within a short time thereafter. 
These networks need to be of a form to enable them to be carried over to the hospice should that be necessary. 
The hospital/hospice must develop ways, without breaching the privacy act, of linking patients and families with other patients and families facing similar trials. 
Should the patient die, communication and support should not abruptly cease unless that is the family's wish.

6. A Patient Advocate must be offered to all patients and parents of children with cancer. There is far too much information for the patient and family to absorb and cope with whilst in 'diagnostic shock'. This state can go on for days, weeks (and even months). They need every bit of help they can get, and particular expert assistance is required in navigating a way through the labyrinth of disjointed support systems. 
Certainly the patient, parents/caregivers etc. do not have to take any notice of all the information. In fact, they will probably feel overwhelmed by it - another reason why it is essential for a patient advocate/social worker be allocated to all newly diagnosed cases.

It is the responsibility of the Hospital/Hospice to keep the patient and family informed of all services and systems for which they are eligible. 
However, it is of course, after all, the Patient and/or Caregiver's choice to do something with the information once they have received it. But, they must be given it, in the first place in order for them to make their choice(s). 

Once the information is given and the Patient/Caregiver is satisfied - these things need to be logged for the protection of staff and the institution concerned. 

7. A Central Information Unit or A Central Group to be responsible and accountable in acting as the hub for information to and from the patient so that the conveying of important information is not lost, to the patient/caregiver. This kind of system once established should be transportable to the hospice if required. e.g.
(i) The crutches incident: we were hiring these for several weeks prior to the district nurse informing us that we could have them on loan from OT. 
(ii) The use of a Community Services Card - since we were not informed, we were paying full rates for all prescriptions and Medical Bills for three years. 
(iii) We were not informed of eligibility for a Sickness and Disability allowance for two and a half years after diagnosis! Consequently, our mortgage increased significantly over the period of our daughter's illness.

8. Make it mandatory that hospitals provide information to the patient and family not only on the medical aspects but also on the relevant support systems/networks etc and inform them of their eligibility for such things as Community Services Cards, financial assistance - WINZ (Income Support), etc. and all information relevant to point 7, above.

Since circumstances change over time, the hospital social worker (or whoever) must keep pace with the patient and caregiver's needs thus informing them of the relevant services they may wish to use or be put in touch with as their situation evolves.

9. If Social Workers are responsible for the transfer of information to patients then they must be held accountable. 
An information package with all relevant material on things such as, WINZ etc. must also make up part of this package. This must be revised regularly to keep pace with the individual patient's and family's changing needs and circumstances.

10. Alleviate the Huge Power Differential between Patient/Parents and the Bureaucratic System. Since the needs and wishes of the Patient must be paramount staff need to keep in mind whether certain policies may in fact be unnecessary bureaucratic policy for the sake of it. 
Staff need to be aware of this differential and to encourage free comfortable dialogue with both patient and parents.

11. The Patient has not always been a patient. The medical fraternity must always remember this and endeavour to get to know the patient instead of basing treatments and criticisms on assumptions built on their own (sometimes limited) personal experience of this age group particularly. Also the medical fraternity need to be very aware that the patient and caregiver are very vulnerable whereas they have the power of the medical establishment behind them. Try to be flexible whenever possible toward the patient and caregiver.

12. Design improvement of some equipment would be welcome, e.g. ramps constructed of lighter material, and the commode needs to be redesigned. Improvements, which I am happy to elaborate on in detail at another time. There are a number of other things too.

13. Oncology Staff Training Programmes (for Nurses and Doctors) of adolescent/young adult patients must include, in my humble opinion:

(a) Psychosocial aspects of adolescent/young adult patients.

(b) The CCF tapes of each of Professor Mark Chesler's talks at the Child Cancer Foundation Seminar, 6th March 1998. (These can be obtained from Auckland Recording Services LTD, phone 09 625 5554)

(c) Staff recommended reading:
"Who Dies?" by Stephen Levine 
"Quantum Healing, Exploring the Frontiers of Mind/Body Medicine", by Deepak Chopra "Vibrational Medicine", by Richard Gerber M.D.

(d) Staff must have access to a good, effective support network, as it must be very wearing coping with cancer patients all day, week in and week out, and their anxious and highly stressed families.

14. Creative Planning within the Nursing shift for the allocation time to get to know the patient.

15. Tape recording of Diagnosis and Relapse appointments offered to the patient and parents. It's not possible to 'take in' all that the doctor conveys at these traumatic appointments.

16. An analysis to be carried out of the increased financial pressures incurred by families due to the serious illness of one of their children. This may help give health providers a better appreciation of the financial stresses and in turn, encourage amendment to relevant government legislation for the necessary financial support required, particularly when a parent/guardian has to leave employment in order to nurse the sick child/adolescent/young adult.

17. Patient and Caregiver Booklet especially useful when nursing the patient at home - containing useful suggestions e.g. the use of a little yogurt to help a patient swallow tablets; how to help guard against bed sores, usual sites and the warning signs etc, etc. 

18. A Recommended Book List compiled by the patients and parents/caregivers and siblings would be helpful. 

19. Collate a list of useful complementary aids found helpful to patients in coping with the main treatments of surgery, chemotherapy and radiotherapy. The information could be gathered from the general nursing staff's knowledge, and from the experience of the parents/caregivers as they also, often see what is helpful to the patient. 

Information on ways of complementing the main treatment e.g. diet, acupuncture, relaxation, massage, etc, needs to be more readily available to patients and parents in order to help them avoid having to, in essence, 'reinvent the wheel' as to where to find the information they want in this regard. 



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Author of this Article : Jane Ewing, as a result of her experience of the Health System as a parent of a sick child 1994-1997..
              Email Contact : jane.ewing@uts.edu.au 

                                                       or       

                                    jane.ewing@stat.auckland.ac.nz