Welfare Reform Bill

Memorandum submitted by Martin Lee (WR 48)

I was recently treated for head and neck cancer, specifically a tumour located at the base of my tongue. This was treated by a combination of six cycles of chemotherapy lasting 96 hours per cycle, followed by daily radiotherapy for a period of seven weeks. During this period of radiotherapy I was admitted to hospital with acute septicemia resulting in a course of intravenous antibiotics and a number of blood transfusions over a ten day period.

As a means to assist other patients I am involved in a local support group (HANDS, based in Poole) that provides support to patients, their families and their carers from diagnosis through treatment protocols and continuing with support post treatment.

With this in mind, and with consideration to my own experiences I would appreciate your time in reading my comments that relate to the noted bill and it’s planned reform.

Prior to the next reading of the welfare reform bill, we urge you to consider the practical implications the reforms to the welfare bill will have on the people of this country recently diagnosed, undergoing treatment,  or recovering from cancer.

In agreement with other respondents, we totally agree that the welfare system is in need of reform and are pleased to see that the introduced  framework is reduced in bureaucracy and appears to offer a simpler approach, understanding and route for many people.

There does however remain issues and concern that the needs of cancer patients may not have been fully appreciated or understood or indeed addressed by the scope of the reform. Whereas we do not for one minute assume or imply any intent or purpose, we are concerned that the welfare of cancer patients are properly considered during this reform process.

Our own concerns are threefold.

Firstly, with regard to treatment and specifically chemotherapy (although radiotherapy should be included) and the means of administering such treatment. There are two primary ways of administering chemotherapy to patients. Intravenously, or orally. It appears that under the reform, patients prescribed and treated with intravenous chemotherapy are little affected. However, those patients treated with oral chemotherapy are excluded from benefit payments without further medical assessment. It needs to be remembered that advances in chemotherapy now means oral chemotherapy can be as strong and aggressive as intravenous chemotherapy, the patient suffering the same sometimes serious side effects and reactions regardless of whether oral or intravenous chemotherapy is prescribed. Many patients treated with oral chemotherapy can be treated at home, thereby freeing up valuable hospital resources and remain in familiar surroundings such as their home during the periods of treatment. This choice of oral or intravenous chemotherapy needs to be based purely on the medical needs of the patient and not whether the choice between the two treatment options will determine whether or not that patient receives any benefit. It needs to be remembered that both forms of chemotherapy can have extremely debilitating outcomes on patients.

Our second concern is that of the reform to the disability living allowance (DLA) which is intended to be replaced by the Personal Independence Payment (PIP). Again, it appears that the reform may require cancer patients to wait up to six months before being entitled to the PIP. Often a majority of patients begin treatment within 30 days of diagnosis. During the first six months (equivalent to the reforms application period for benefit) many patients will have undergone life changing treatment, resulting in recovery periods that often exceed eighteen months often two years (again far more than the reforms target of back to work in a year after which benefit is scheduled to cease). Cancer patients and their families are often in need of immediate financial assistance, as they are immediate medical assistance. We feel the two need to be addressed in parallel and that some provision needs to be considered within the reform to perhaps secure benefit payments to cancer patients at the same time as treatment is started.

Thirdly and additionally, it would appear that if a cancer patient does not get the DLA awarded at the middle or higher rate then the person caring for them will not be entitled to a carers’ allowance.  It therefore follows that if the carer takes unpaid leave they will not receive HRP.  This may have a detrimental consequence on their ( the carers’)future pension record. 

It seems therefore it will be the people who are not on means tested benefits who will be hardest hit.

In conclusion, we would urge that cancer patients are not to be seen facing any obstruction or further medical assessments by any reform to the welfare bill, regardless of oral, intravenous chemotherapy, or radiotherapy. That their access to benefit be reviewed within the reform with consideration to their practical needs and with due consideration that treatment is often started within 30 days of diagnosis. From the point of diagnosis cancer patients need the high levels of medical support, psychological support and financial support if they are to stand any prospect of recovery and eventually returning to a near normal life and to be integrated back into the work place.

With respect to the proposal of the Universal credit, which is not a new proposal.  Universal Credit will not be as straight forward as we are led to believe.   It is how benefits used to be under the old supplementary benefits system.  Also there seems to be talk of the Social Fund going. 

Many cancer patients on benefits meet the critera for their partners to get help with fares to visit them whilst in hospital.  Who will pay this if it is abolished I know there is talk of it going to Local Authorities which is where it used to sit before the Social Fund came in.

Also DWP have replaced local offices and have introduced centralised services.  One question to be addressed is what happens to people when they make a claim and it is sent to a benefit delivery centre for processing and in the interim families have no money and there is no social fund.

I do not believe the system will be simpler as there will still be the need to complete claim forms and prove income and capital.  Also it will mean only one dept for redress.

Although many patients do very well through the cancer journey, in my experience the families where sadly the man dies are left struggling as bereavement allowance is only paid to surviving partners for 52 weeks.  It used to be a pension for life.

Many partners under pension age struggle.  I have to say it is mainly women.  They invariably loose their homes.

Although I understand your clear focus to concentrate on DLA, the whole benefits system is not a good one for cancer patients and their caregivers.

I do believe cancer patients need to be considered with due respect, fairness and importantly understanding to the complexity of their situation and the long term effect that the diagnosis has for both the patient and his or her family. It should also be remembered that no two patients, even with the same type of cancer receives the same treatment protocol. There is, therefore no standard treatment, each individual is prescribed a specific course of tailored treatment. Therefore is appears unreasonable to then assume one set of rules as outlined in the welfare bill can be applied. Rather each patient will require specific consideration. It would be a mistake to try to standardize the way cancer patients are reviewed.

Nothing in this letter is forwarded to be obstructive of confrontational. The principal of reform is both acknowledged and encouraged. The purpose it to assure a fair and understanding outcome for those who are unfortunate enough to be diagnoses with cancer and the hope that the needs of cancer patients will be understood and acted on by what is hoped a compassionate government.

April 2011