Longer review periods (5 to 10 years)

Pedro is 71 and has been diagnosed with kidney failure and placed on a transplant list. His condition requires ongoing kidney dialysis treatment to manage his symptoms and maintain his health while waiting on a suitable organ donor. Kidney dialysis occurs 4 times per week during the day. Pedro receives dialysis at home, as his husband has been trained in administering this.

Pedro’s husband provides a statement of support. He states that Pedro has been informed the average wait time for a kidney is around 3-4 years. According to Pedro’s doctors, on receiving a kidney, Pedro’s recovery process will begin. However, the statement is vague on the timeframes of this process, as well as on the overall prognosis of Pedro’s health.

The case manager consults medical guidance and learns that

• the initial recovery period typically lasts 12-18 months
• the process involves close monitoring by the medical team to ensure the transplanted kidney functions properly and there are no complications such as infection or rejection.

Whilst this information is helpful, the case manager is still unclear as to what this will mean for Pedro’s needs and any potential changes going forward. They have a case discussion with a Health and Social Care practitioner. The practitioner explains that, in addition to what the case manager has already understood about the recovery process, Pedro will require ongoing rehabilitation and follow-up care to optimise his recovery.

Following the rules for renal dialysis, the case manager awards Pedro the lower rate of PADP under special rules for renal dialysis. Following the case discussion and reviewing the waiting list for kidney transplants and length of recovery, they settle on a review period of 5 years and 6 months. Should Pedro’s kidney become available earlier than expected and the recovery process conclude earlier than the scheduled review, Pedro would have to report a change of circumstances once his needs have changed to either a level that

• is so minimal that he does not meet the criteria for the lower rate of PADP
• may include both daytime and night-time needs, due to a new condition or disability.

Margot is 69 years old and was diagnosed with breast cancer following a routine screening. Upon further evaluation it was determined that she required a double mastectomy (removal of both breasts) to remove cancerous tissue and minimise the risk. Margot underwent the surgery 3 months ago, which followed a 3 week stay and recovery in hospital.

A relative helps her to complete a PADP application. In her application form, Margot explains that she is now undergoing 3 rounds of chemotherapy treatment, potentially followed by radiation. The chemotherapy causes her severe tiredness and fatigue. Margot tires very easily doing the simplest of tasks. Getting out of bed is an effort and she has recently been diagnosed with anaemia, which is a common side effect. This is impacting on her breathlessness and moving from room to room can exhaust her.

She is assisted with self-care such as washing, and most times she will limit this to the sink, as getting into and out of the shower or bath, and maintaining her balance causes her to sleep for hours after.

She has to have a soft diet as she has developed mucositis (irritation of the lining of the mouth) which has caused her to lose weight. She is prescribed build-up drinks from her consultant to try and aid with this.

She has severe nausea and sickness associated and is prescribed medications. She is unable to keep the medication down long enough to help and this is now prescribed Intra venously (IV) and is administered at each chemotherapy session. She receives this 4 times per week.

She has developed diarrhoea with the treatment, and this has impacted on her continence as she has no warning signs. She has developed insomnia, which is linked to her treatment for breast cancer. She is unable to sleep at all at night and has regular cramping. She is up 2-3 times per night to try and ease this. This adds to her fatigue and exhaustion.

In the statement of support, the relative explains Margot’s current situation and provides additional details about her support needs: Margot’s memory and concentration is affected with the treatment and she has a short attention span. She relies on family to remind her of appointments and to deal with her correspondence as she feels she is unable to deal with things she used to.

A short letter from the hospital, which has been submitted as confirmation from a professional with the application, states that she will be prescribed hormone therapy depending on the results of initial treatment.

The case manager requests a case discussion where it is discussed that the recovery process from a double mastectomy and breast cancer journey is a gradual and ongoing process due to the complicated and timely treatments.

The practitioner explains that recovery from a double mastectomy can take several years, as she needs time to heal, both physically and emotionally.

The case manager determines that Margot is entitled to the higher rate of PADP, starting from the date she meets the backwards test, and decides to review Margot’s case in 5 years post surgery and cancer treatments.

Dan is 66 years old and has experienced a stroke, which has resulted in him experiencing dense right sided weakness.

Dan requires assistance with:

• washing and dressing, as he lacks the fine motor skills and balance to complete tasks like buttoning, pulling a zip or dressing his bottom half
• mobilising around the home due to poor balance
• transferring to bed as he lacks depth perception and has poor balance increasing his risk of falls
• verbal communication due to aphasia.

Additionally, Dan has to be supervised with diet due to ongoing swallowing issues and risk of choking. He is on a soft diet. He also requires assistance and supervision with medication due to a risk of choking.

Dan spent a number of months in an acute rehabilitation facility following his stroke, where he received intensive specialist physiotherapy and occupational therapy and input from speech and language therapists. Dan made slow progress in this environment as it was far from home and visits from family were more difficult, affecting Dan’s motivation and engagement with therapy and a new diagnosis of depression.

Dan has left this acute facility and now lives in a supported residential establishment due to the difficulties he would have living alone. Dan and his adult children are paying for his stay in this private facility. A support worker helps him apply for PADP.

The application form also tells the case manager that Dan now has physiotherapy and language therapy sessions once per week, although he still sometimes lacks motivation to attend these appointments due to his low mood.

In the statement of support, the support worker explains that Dan has found his new situation to be very difficult and finds it hard to engage with his support network and the other residents that he lives with. They state that Dan may be able to function differently if his depression was better managed and he was able to participate in rehabilitation sessions. Dan is making slow progress regarding this goal. The support worker explains that due to the slow progress being made, Dan would need ongoing long-term support in order to live independently.

The case manager determines that Dan is entitled to the lower rate of PADP, as he fulfils the day-time condition. They establish that, given the nature of Dan’s condition and the slow progress being made, his condition and level of needs are unlikely to change. They are considering an indefinite award but are unsure whether this would be the right decision for Dan. They request a case discussion to discuss the impact of Dan’s depression on his overall process and to understand the potential for his depression to improve over time. The Health and Social Care practitioner confirms that Dan’s depression:

• is responsible for his stagnating recovery process
• more likely than not to decrease in severity over time, leading to significant improvements in his overall recovery and health.

The practitioner is unable to say how significant these improvements would likely be.

The case manager establishes that they are unable to determine whether or not, on the balance of probabilities, Dan will be more likely than not to continue to meet the eligibility criteria for PADP. The case manager decides that a review date in 10 years is more appropriate than an indefinite award, particularly given the complexity and potential long-term changes of Dan’s circumstances and on-going levels of specialist input.