The evidence we wish to submit to the committee centres around the observed responses of trial patients who "wrestle" with their quest for knowledge and information in the face of an increasingly busy NHS.

  The quest for information brings with it an implicit, sometimes explicit, need for reassurance that the treatment allocation is the optimal treatment for their condition. Also that the prescribed regime gives the patient the best chance for recovery/remission or palliation and confirmation that any symptomatic or functional changes are or are not attributable to a changing disease status.

  This personal struggle often depends on the information needs of the individual and is not experienced by all trial patients. In our experience however those patients with unmet information needs experience an exacerbation of emotional turmoil and often attend non NHS organisations such as Vine House requesting openness, advocacy and unequivocal exchange of experience and information. The different roles and power balance varies considerably between NHS and non NHS organisations thus bringing a different level of patient—professional interaction. In the voluntary sector patients feel less passive and more empowered and actively seek opportunities to air their grievances, release emotional tension in an attempt to ameliorate disease and treatment related distress.

  In taking a "Fresh Look" at cancer research we wish to share our observational evidence, which suggests that the role of the voluntary sector especially organisations that provide psychosocial support is vital for the psychological well being of many trial patients. This whole area of cancer support can yield significant data on the "total experience" of trial participation and factors which can contribute to non-recruitment, attrition but more importantly the negative emotional consequences cancer research can bring.

  Examples of the issues and questions which patients take beyond the NHS;

1.  Why can I not get straight answers to my questions.

2.  I want to know more about the range of treatment options and their side-effects.

3.  I want to know what the possible outcomes may be.

4.  Why do people treat me like I can't cope.

5.  I want to know about uncertainties held by my medical team.

6.  I want to make informed choices but I can rarely get a straight answer or one I can understand.

  This is by no means an exhaustive list but it does contain evidence of key considerations and questions that we think deserve further attention in this fresh look at cancer research. It is our experience that for many of our patients their experiences on a clinical trial are analogous to their total cancer experience. They often feel like outsiders, looking in on their own lives, helpless and passive simply awaiting the next snippet of information. For many patients trial participation has complex emotional consequences, which centre on access or barriers to information and problems associated with active informed involvement in treatment decisions.

  In closing, we would simply ask the Committee to consider that if such questions/issues persist for cancer research patients then it could be argued that participants may benefit from a shared care approach. In light of the different patient-professional relationships that exist outside the NHS, cross sector collaboration should be accepted as a key complement to psychological wellbeing and added to the fresh look agenda for the future of cancer research.

Margaret O'Donoghue

Director of Services

Vine House Cancer Day Centre

Celia Rhodes

Nurse Counsellor/Trainer

Vine House Cancer Day Centre

Lesley Seddon

Research Nurse

Vine House Cancer Day Centre

  1.  Patients aware of needs for trials; may be best chance for them, previous treatment resulted in recurrence.

  2.  Patients today—desirous of information, aware of drugs/treatment, Protocols, not only in UK but internationally. Many have INTERNET.

  3.  If treatments are unavailable in UK, explanation is vital, not registered, lack of funding etc: If treatments available at differing cancer centres patients will be aware; will travel being in desperate state.

  4.  Patients aware that the outcome of their cancer is successful management—AS SOON AS POSSIBLE AFTER DIAGNOSIS.

  5.  Important for me to stress that Cancer research is a partnership, all equal. Follows—HONESTY, INFORMATION, EXPLANATION.

  6.  Impossible for patients to give "informed consent" without partnership!

  7.  Majority of patients today—allowed/participants; in charge of self, Promotes positive approach, less anxiety/mental trauma/immune system.

  8.  Patients/explanation/rights. Risks disclosed with HONESTY. Criteria/tests/tumour response & how determined?

  9.  TRIALS—Rules, procedures standardised & specific. Patients advised. Advances in cancer treatment rarely made by one physician but tested by co-operation in differing centres around the country.

  10.  TIME—EQUALITY—CO-OPERATION—ADVOCACY

  11.  Advocacy—Voluntary sector. NHS patients concerned/aggressive.

  12.  Patients benefit from shared care approach.

  13.  CROSS SECTOR COLLABORATION—KEY COMPONENT TO PSYCHOLOGICAL WELL-BEING.

21 June 2000